Expert Postings
January 1995

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

Table of Contents

This file contains postings made by the following professionals: 
   Dr. 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 
   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. 
(Disclaimer:  Verify this information before applying it to your situation.) 
Date:         Sun, 1 Jan 1995 16:24:07 PST 
From:         "Donald D. Kasarda" ( 
Subject:      cost of testing lab 
)Bill Elkus raised a fascinating point below about the possibility of creating 
)an independent lab.  Might Don Kasarda or Joe Murray have an idea about how 
)much $$ it might cost to set up and maintain one at a university? 
George Balch asked if I could estimate the cost of a testing lab for products. 
It is somewhat difficult because the cost would depend on the situation. 
For example, will the site (university?) eat the cost of laboratory space 
and equipment, or will that have to be provided.  Will the work be carried 
out by addition of one or two people to an existing unit, or will an 
independent operation be set up. That sort of thing.  I would guess that a 
minimal amount would be around $100,000 per year.  Long term funding would, 
of course, be desirable. A Ph.D.-level scientist worth anything will expect 
a salary somewhere between $35,000 and $60,000 per year depending on 
background and experience (even more for the very best with highly pertinent 
experience).  M.S. level people will cost only slightly less. B.S. level 
people will be paid in the $20,000 to $40,000 range, but would usually serve 
mainly as assistants.  B.S. level people in science are usually not 
qualified to operate independently (obviously there are be major exceptions 
to this; there is no magic in a degree at any level), because many of the 
better graduates at the bachelor's level have tended to go on for advanced 
degrees during the past few decades as a consequence of abundant teaching 
and research assistantships for science graduate students.  Also, it is 
difficult to hire decently-trained scientific people for short terms. Good 
people who have sweated through 4-10 years of university education in 
scientific fields are seldom willing to work for six months here and six 
months there.  Adaptation to new work is often slow for people who have been 
working in another area--months, sometimes years, depending on the 
techniques to be used, how difficult the problem to be addressed is, and the 
background of the person involved.  In my area, which is largely involved 
with understanding the fundamental molecular structure of gluten proteins, 
their interactions, and the implications of both for wheat quality (and 
celiac disease), I have found that even very good new Ph. D.'s take 2-5 
years to approach solid understanding of the area, to become at ease with 
the many different techniques we use, and to develop a capablity to 
contribute independently.  One could argue with almost every point I have 
brought up, but my own feeling is that if the effort is too much based on a 
shoestring level of funding, you will probably not get the quality of output 
that is desired. 
Some of the problems with products are difficult to address.  A major one is 
that manufacturers often buy ingredients from the cheapest sources, which 
often change month by month.  One source may have a gluten-free ingredient, 
while the next one may not.  Often the ingredient manufacturers are 
protective of their information and will not tell the next-stage 
manufacturer how they made the product or what ingredients were involved in 
the process (for example, was the source of a particular enzyme a crude, 
malted barly extract, or was it bioengineered product from bacteria?). 
Consequently, even with good will, a very large manufacturer will often have 
difficulty saying if the product is gluten-free or not.  And even though 
such large companies could contract for gluten-free ingredients, this would 
cost them money and I doubt the celiac market is sufficient to recompense 
them for this. 
Hope this isn't too far off what George Balch wanted to know. 
Don Kasarda 
Date:         Tue, 3 Jan 1995 11:32:39 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: testing for gluten 
)Can Don (Kasarda), and/or others, please comment on two points? 
)(1)  What is the cost, availability and reliability of home gluten testing 
)kits?  The Gluten Free Pantry offers a kit from Australia, I have never tried 
)it.  Are there others available?  If the food manufacturer whose brand name 
)goes on the product cannot honestly tell us whether or not there is gluten in 
)their products, because they really don't know, then it seems the only other 
)alternative is for the consumer to test the food --- or everyone cooks their 
)own food from fresh raw ingredients, which is not practical these days. 
)(2)  Which types of ingredients are the most (or least) subject to the hidden 
)vendor problem outlined about?  At least we could know which types of foods 
)have the most accidental gluten risk. 
)       Bill Elkus 
I can't say anything much about your second question, but in regard to the 
We have used the Australian (developed by John Skerritt) home test kit to 
check proteins in wheat starch.  Although we did not do extensive studies, 
the test seemed to work exactly as it was supposed to.  One sample that 
should have had enough protein to show up in the test did so with a clear 
light blue color.  The other sample, which was quite low in protein 
(although by later testing this sample was found to have gluten proteins in 
minute amounts) and should have been below the stated sensitivity of the 
home test, did not show any color.  The Australians also market a lab test 
kit that has about 10-fold higher sensitivity than the home test kit.  This 
kit is quite expensive and we did not buy it, but I think it would have 
indicated the gluten in the low-protein starch sample. I think the 
Australian tests work well with fairly simple materials like wheat starch or 
bread. It would probably show up flour used on conveyor belts to prevent 
sticking of candy bars, for example. However, I think it is difficult to be 
sure that the test will always work well when used to analyze a product with 
various complicating ingredients. 
Mary Alice Warren has told me that the Australian test gives a blue color 
with certain acid solutions, including pure lemon juice (if I recall 
correctly).  Thus, there may be problems in testing complex foods having 
many other components that might interfere with the test.  I think it will 
be difficult to come up with a test that is insensitive to all possible 
complicating substances in complex foods (gravy, casseroles, "nutrition" 
candy bars, and so forth).  There may be similar products to the Australian 
test on the market in Europe.  I know some were headed for 
commercialization, but I don't know if they are now available or not.  My 
guess is that, because of the chemistries involved, there will always be at 
least a slight chance of an incorrect result no matter what test is used. 
To sum up, the Australian test seems like a pretty good one to me, and worth 
trying for many products, but I doubt it is absolutely failure proof.  I 
think, in general, it is still best to track down the manufacturing 
information and avoid anything that doesn't check out rather than hoping for 
a simple universal test that will never give you the wrong answer.  On the 
basis of my experience, I would say that analysis of many materials requires 
a certain amount of research because no single, simple test will give you 
the correct answer. 
I suspect, but cannot be absolutely sure, that the concern of many about 
trace amounts of gluten in foods that on the whole are not likely to contain 
gluten  (grain alcohol, white vinegar,for example)is unwarranted, that the 
whole thing is being overblown, but without human testing and double-blind 
studies, who knows?  Sure, there may be someone who reacts to a single dose 
of, say, 0.1 mg of gliadin in some serious way, but I think such people are 
very rare.  If this happens to 1 person in 10,000, or one in 100,000, or 1 
in 1,000,000, is it worthwhile for everyone concerned to avoid all 
manufactured foods and make everything from scratch.  As usual, we can only 
say that it is a personal decision that each person must make for himself or 
herself.  Personally, I think that many potentially gluten-sensitive people 
are seeking a risk-free world that will never exist.  When you cross the 
road, drive a car, fly in an airliner, you are taking a certain amount of 
risk, but you feel you are prepared to take that risk.  To some extent, the 
same decisions apply to eating.  Pay attention to what your body tells you 
and avoid things that don't seem to agree with you (I do), but be skeptical 
and perhaps carry out some experimentation of your own. Maybe try the food 
again when you are feeling well.  Perhaps you will not have the same reaction. 
Don Kasarda 
Date:         Tue, 3 Jan 1995 10:25:00 GMT 
From:        Kalle Reichelt, (
Subject:      Intestinal permeability in schizophrenia 
The data on this are conflicting and have been studies using different 
1:  Wood NC et al (1987) Brit j psychiat 150:853-856 used the 
cellobiose/mannitol test and found increased permeability in chronic 
schizophrenics in 11 out of 32 patients. 
2:  Lambert MT et al(1989)  Brit J psychiat 155,619-622.:used Chromium 
labelled EDTA and found no difference in 12 schizophrenic patients , 12 
patients in remission and normals. 
3. We do however, all take up trace amounts of intact protein after a meal ( 
see eg.Husby S et al (1985)Scand J Immunol 22:83-92) so that a decreased 
breakdown of fragments of these proteins could easily lead to accumulation. 
One molecule of gluten contains 15 opioid sequences (Fukudome and Yoshikawa 
(1991)FEBS Letters 296:107-111) and even 2.5 nanomoles of protein per ml 
blood could therefore cause an "avalanche" of peptides being formed.  The 
more so because peptidase defects regularly cause peptiduria (Watanabe Y et 
al (1993) Res Comm Chem Pathol Pharmacol 81:323-350; Abassi Z et al (1992) 
metabolism 41:683-685;Blau N et al (1980) J Inherit metab Dis 11 (Suppl 2) 
240-242). Peptidura is of course a sign of hyperpeptidaemia.  We do not 
really need increased uptake to get into trouble although that would 
accelerate the process and if sufficiently large it could overwhelm even 
normal breakdown capacity.  That there is gut to blood to mother milk 
transport of intact food proteins is illustrated by papers where intact 
antigens were found in mothers milk (Axellson I et al (1986)Acta paed Scand 
75:702-707;Kilshaw PJ and Cant AJ (1984)Int Arch Allergy Appl Immunol 
75:8-15; Troncone R et al (1987) Acta paed Scand 76:453-456;Stuart CA et al 
(1984)Clin Allergy 14:533-535) 
4. We all have IgG antibodies to food proteins indicating uptake of 
immunologically active proteins in trace quantities. In schizophrenia IgG 
antibody increases against gluten have been reported ( Dohan FC et 
al(1972)Biol Psychiat 5:127-131;Hekkens W Th et al (1980)in Biochemistry of 
schizophrenia and Addiction ( edit : Hemmings G ) Lancaster ,MTP press;Rix 
KJB et al (1985) PSYCHOL MED 15:347-354).  Increased  IgE antibodies to food 
proteins were also found in schizophrenics ( Sugerman AA et al (1982) Annal 
Allergy 48:166-171). Ashkenazi A et al (1979)Amer J psychiat 136:1306-1309: 
found that leukocytes reacted to a fraction of gluten in a fashion 
intermediate between coeliac disease and normal controls. 
Finally we have ( Reichelt Kl and LandmarkJ (1994) Biol psychiat :in press) 
found IgA antibody increases in schizophrenics diagnosed after DSM III and 
sex and age matched controls .These IgA antibodies were mainly against 
gliadin, gluten, lactoglobulin and casein. 
Unfortunately it is extremely difficult to finance research into diet and 
psychoses.Neuropharmacology has become very dominant for obvious reasons . 
The dismal state of the patients and their social integration in many cases 
clearly makes more research an urgent matter 
K. Reichelt 
Pediatric Research Institute 
N-0027 Oslo, Norway 
Tel: +47 22 86 90 45 
Fax: +47 22 86 91 17 
Date:         Tue, 3 Jan 1995 21:39:01 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: Gluten home testing 
)It sounds to me like home testing is worth a try.  I understand that the 
)Austrailian kit is fairly reliable.  Does anyone 
)know how I might go about getting one?  Thanks. 
We bought our Medical Innovations Limited, Gluten Home Kit from Food 
Analytics, Inc., P. O. Box 43, Route 37, Massena, NY 13662 (Tel. 
800-263-3677) for about $50.  As a government employee, I guess I should add 
a disclaimer.  The name of the product used is given for information 
purposes only and is not meant to exclude others that may be suitable, or to 
imply endorsement by the U. S. Department of Agriculture. 
Date:         Wed, 4 Jan 1995 16:21:25 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: millet, buckwheat, quinoa etc. 
)Does anyone know the latin name of teff?  Or its botanical 
)classification (plant family)?  I refuse to try "non-wheat" grains until I 
)know whether they are closely related to problematic grains.  Does anyone 
)know what kamut is? 
)Laura Johnson-Kelly 
Two of the Latin names for Teff are Eragrostis Tef and Eragrostis Abyssinica. 
Kawmut is Triticum polonicum and is very closely related to durum wheat, 
which is commonly used for pasta making.  Triticum polonicum is more closely 
related to bread wheat than is rye or barley.  Teff is a grass, but is 
likely to be safe for celiac patients on the basis of being more closely 
related to corn, sorghum and millet than to wheat, rye, barley, oats. 
Quinoa, amaranth, and buckwheat are not grasses, not even monocots, and so 
distantly related to wheat that, on that basis, they are unlikely to be 
active in celiac disease, although individuals may not tolerate them for 
some other reason. 
Don Kasarda 
Date:         Tue, 10 Jan 1995 17:59:17 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: Gluten in OTC and Prescription Drugs 
Bill Elkus wrote: 
)...I was given a copy an article entitled "Gliadin in Pharmaceutical 
)Products" by  Dr. S.S.  Schiffman, Dept of Psychology, Duke 
)University, Bldg 9, Durham NC 27706 in the "Jof Pediatr Gastroenterol 
)Nutr, Vol 19, No. 1, 1994, page 27-33" 
)It tests for gliadin in 59 different frequently prescribed drugs and 
)OTC medications, and most of them came up positive, including 
)Tylenol, Actifed Plus, Benadryl, Excedrin and many others... 
Reply from Don Kasarda: 
I was sent the article in question by Michael Jones for my comments. 
Although I can not say that the results are invalid, I have some 
reservations about the use of a commercial antibody to gliadin that might 
cross react with minor components in the drugs.  There was no mention in the 
article of control experiments that I think would be important for me to 
feel confidence in the results (although such experiments may have been done 
and not mentioned).  For example, were control experiments to check for 
cross-reaction of the antibody preparation with corn starch and other 
gluten-free components of drugs carried out?  Because the antibody 
preparation is crude, it will likely contain antibdodies to various other 
substances in addition to gliadins (perhaps even dietary components of what 
was fed to the animal used to make the antibodies), although these other 
antibodies would likely be present in much smaller amounts. Additionally, I 
would guess that the major drug companies are now aware of the potential 
problems with gluten in their products and I find it surprising that so many 
preparations showed up positive in this work.   Until my questions are 
satisfied, I reserve judgement on this work.  Elaine Hartsook, GIG, Seattle, 
has commented on this paper in one of her recent newsletters.  I don't have 
time right now to pursue the matter with the authors of the paper to see 
what controls were done.  Perhaps someone else does. 
Date:         Wed, 11 Jan 1995 17:56:42 PST 
From:         "Donald D. Kasarda" ( 
Subject:      CD and cancer 
Quotes from the paper by Richard F. Logan et al. 1989. "Mortality in celiac 
disease." Gastroenterology 97:265-271. 
"As anticipated, our study confirms the greatly increased relative risk of 
small intestinal lymphoma in celiacs."  "Nevertheless it is clear that the 
absolute risk of a celiac dying from small-intestinal lymphoma is small, 
particularly when those whose lymphoma developed shortly after diagnosis are 
Date:         Fri, 13 Jan 1995 17:52:00 -0600 
From:         "J. Murray" ( 
Subject:      experience with kidney disease either in CD or in family 
members of CD 
Has any one had experience with kidney disease either in CD or in family 
members of CD.  Joe 
Date:         Mon, 16 Jan 1995 16:21:23 -0600 
From:         "J. Murray" ( 
My inquiry about renal/kidney disease and celiac disease was specifically 
to inquire about individuals experience with the occurance of any of the 
various forms of nephritis in someone who also had celiac disease or in 
someone who had a close blood relative with celiac disease.  I have 
already done a medline search and there is some conflicting research on 
the topic.  Joe Murray 
Date:         Wed, 18 Jan 1995 21:18:13 -0600 
From:         "J. Murray" ( 
Subject:      Re: iritis and CD 
I have heard of a case of iritis in celiac disease.  This was (if i 
recollect properly) autoimmune in nature.  The treatment is determined by 
the eye condition itself.. the coexistence of the two conditions does not 
alter the treatment of either.  Interestingly Iritis is also seen more 
frequently in ulcerative colitis.  Joe Murray 
PS if I find the original citation I will post it. 
Date:         Wed, 18 Jan 1995 21:28:25 -0600 
From:         "J. Murray" ( 
Subject:      Re: Re infections and celiac disease 
Celiac patients may be prone to certain bacterial infections,  This risk 
relates to functioning of the spleen that may be defective.  The spleen 
is important in the response to certain bacteria especially 
pneumococcus.  Older celiac should discuss with their Dr. about whether 
they should get Pneumovax which might help protect against this type of 

another situation is IgA defeciency which a specific type of defeciency 
in one type of antibodies which affects about 2-3 % of celiacs.  The 
presence of this antibody defect can make that individual more 
susceptible to infections also.  It can be detected by measuring the 
level of IgA in the blood.  I also leads affected individuals witha 
greater chance of giardia infections in the bowel that can cause celiac 
like damage( usually less severe and mostly short term). 
Joe murray 
Date:         Wed, 18 Jan 1995 21:37:27 -0600 
From:         "J. Murray" ( 
Subject:      Re: The accidental ingestion of gluten 
The decision to induce vomiting in anyone who has ingested a potential 
problem substance is based on the substance and the potential or expected 
effects of the ingestion.  In short if you know the kid is going to get 
really sick with several days of severe illness then immediate induction 
of vomiting with a pediatrician prescribed method may be justified.  ( 
never use salty water). 
If the effects of the gluten are short and relatively mild then itys 
probably better to ride out the effects of the ingestion. 
Discuss it with the kids pediatrician as there are some kids who are at 
risk for aspiration with vomiting,(That means the vomit going into the lungs) 
Joe Murray 
This is provided as general information not as specific medical advice. 
Date:         Thu, 19 Jan 1995 17:13:17 GMT 
From:         U165 ( 
Subject:      re celiac resources in western europe 
One of my patients is travelling to England and hence to Germany 
later this month.  I would be grateful if any one out there has info on 
sources for GF foods or other resources that would be helpful for a joun 
eying student.  He will be away for 5-8 months.  Joe murray 
Date:         Mon, 23 Jan 1995 16:16:26 -0600 
From:         "J. Murray" ( 
Subject:      Re: CEliac disease prevalence in the general population 
In response to the comment on the icellandic study.  I am aware of 2 
studies done on healthy individuals to screen for the prevalenvce of 
undiagnosed gluten senstivity.  One in Linkoping Sweden and the other in 
northern Ireland.  Both looked for gliadin antibodies in the blood of 
healthy individauls in the Irish study it was done on volunteer blood 
donors( who by selection are asymptomatic and have to weigh more than 110 
pounds and have a normal blood count.  In the Irish cas it was claimed 
that 1 in 100 were positive.  In the swedish study one in 300.  These 
stuies did not confirm all of the cases with biopsies so it is not clear 
how many positives were false positives.  nevertheless it suggests that 
there is a signifigantly larger number of individuals whpo may harbour 
gluten senstivity. 
Regarding info in the USA.  There are 2 studies one in children from 
Buffalo which suggestted a prevalence of 1 in 10,000 in western New York 
state.  and A study reported last year from the Olmsted county 
epidemilogical project based at the mayo clinic which suggsted 1 in 5000 
inhabitants of that county as having a diagnosis of CD. 
These two studies represent only the very tip of the iceberg.  One study 
reported from Utah on the prevalrence of dermatiis Herpetiformis ( a skin 
manifestation of gluten sensitivity) suggested a prevalence of 1 in 
10,000 for it in the Utah pop.  This is interesting in that in Europe DH 
is thought to be much less common that CD.  ???? are the ratios reversed 
here or is celiac disease much underdiagnosed? 
My guess based on my experience in Iowa is that it is underecognised and 
may even be more likely to present in more subtle ways here than 
elsewhere.  It has been recognised in Scotland and other places that the 
rate of diagnosis does parallel suspicion for the illness by the 
What could, should be done to fill the information void. 
We and some others are looking at the preva;lence of CD in what are known 
in Europe to be high risk settings such as individuals with autoimmune 
The screening of a large cohort of 'normal individuals with serology, 
would be the definiative study and others would like to do.  What 
stopping us?  Expense. 
To do this study requires a large amount of money.  To get government 
funding you have to have preliminary data.  To get prelimuinary data one 
has to do the study. To do the study one has to have the money.  So you 
see the problem with this type of speculative study. 
Any ideas that anyone would like to suggest on this topic would be 
gratefully recieved.  Mmeanwhile we'll keep nibbling away at the problem. 
Joe Murray 
Date:         Mon, 23 Jan 1995 16:21:39 -0600 
From:         "J. Murray" ( 
Subject:      Re: CELIAC Disease and hair loss5 
Hair loos in patients with celiac disease may be due to several things 
associated alopecia areata( patches of hair loss ) or universalis( total 
hair loss) both autoimmune conditions 
associated thyroid disease esp hypothyroidism 
( the above is not an exhaustive list) 
Unrelated hair loss due male pattern baldness which can affect both men 
and women 
Often these problems can be helped by appropriate treatment. 
joe murray 
Date:         Mon, 23 Jan 1995 16:34:16 -0600 
From:         "J. Murray" ( 
Subject:      Re: CELIAC disease and bone density5 
Most celiacs who are diagnosed in adult live have deminished bone density 
when tested. The drop in bone density is likely due to either the 
malabsorbtion ( or decreased intake of calcium in dairy products) of 
calcium and possibly magnesium.  In  a smaller number of patients it amy 
be due to the malabsorbtion of vitamin D. 
In children it v=can cause rickets which is waekening and subsequent 
deformity of the bones primarily due to vit D deficiency. 
Botht he adult bne denstiy and the childhood changes usually reverse with 
the gluten fre diet.  It is not clear how well post menopausal women can 
remineralise their bones. 
Some adults can present with what are pseudo-fractures of osteomalacia ( 
which is the equivalent of rickets.  This can cause pain in the hip and 
shoulder girdles as well as back pain. 
There is as yet not research results in on the ue of so-called bone 
density building drugs that used by some specialists in osteoporosis. 
Hopefully most individuals can remineralise their bones witha GFD and 
supplementation of calcium intake. 
"maxing" out on Vitamin supplements is not recommended as some of the fat 
soluble vitamins can reach toxic levels if not carefully monitored. For 
example a dozen small carrots has lots of good things like b-carotene but 
if comsumed daily can result in life threatening vit A toxicity.  That 
c=was common when carrot juice was in vogue. 
Joe Murray 
Date:         Mon, 23 Jan 1995 16:41:57 -0600 
From:         "J. Murray" ( 
Subject:      Re: celiac disease and diabetes 
There is a well known association between CD and diabetes mellitus.  Case 
series fromn Europe have documented a  rate of association of about 
3-10%.  Our experience witha recent study hopefully soopn to be published 
is in agreement with that.  Usually the DM is diagnosed first and the CD 
later if at all. 
It is certainly a dietary DOUBLE WHAMMY!! 
I may have advantages for the diabetes in that the control may improve 
after the introduction of the GFD due to more reliable absorbtion of the 
If our estimates are right then there should be thousands ofpatients with 
type 1 diabetes out there who have CD aand dont know it. I currently care 
for about a dozen people with the combined disorders. 
Joe Murray 
Date:         Tue, 24 Jan 1995 19:58:27 -0600 
From:         "J. Murray" ( 
Subject:      Re: Visits to the G/I 
Bill elkus asked> 
) Do parents of a CD child on a strict GF diet, with confirmed negative CD 
) antibodies once the diet has been establish, no adverse g/i symptoms (i.e 
) bowel, cramps, stool), good growth and otherwise normal health....does this 
) child still need to be seen by a g/i periodically, and if so, what does the g/i 
) do during the exam 
Joe Murray answered ( general info only not specific mediacl advice) 
If the original biopsy was that of classic CD disease and there was a 
complete clinical response to the GFD, i.e.symptoms gone, deficiencies 
corrected, antibdies going from abnormal to the negative when done in a 
reliable fashion. then follow up biopsy is not necessary.  Growth sudden 
be a along a reestablished path.  The child is compliant with the 
gluten free then there may not be a need to continue to see pediatric 
GI.  A reason to continue to do so maybe evry other year or so would be 
interact with resource people like dietitian, and mediacl update on 
developements as they may relate to the individual patients.  I realise 
that may of the celiac community obtain this type of information 
themselves through support groups. 
In life long conditions that are diagnosed in childhood it is all too 
easy and frequent that the patient as they grow up forget about the 
problem and with changes in mediacl providers the Drs. forget about the 
significance of the diagnosis in later life.  I see all too many pateitn 
with a childhood diagnosis of CD who have forgotten about it and drifted 
off the diet, who then present later in life with " ulcers" colitis" or 
irritable Bowel"n  who undergo misdirected tests when the corect 
diagnosis is in their old history.  This would be one advantage of a 
personel health data card that would follow people for life. 
In situations where the diagnosis is in some doubt there should be some 
careful follow up by the pediatric GI. 
Joe Murray 
Date:         Tue, 24 Jan 1995 20:11:46 -0600 
From:         "J. Murray" ( 
Subject:      Re: Family incidence of celiac disease 
I am not sure if my monograph on the family incidence has been posted in 
the past to this listserve, I must must respond to the suggestion that a 
GFD could be started in family members who suspect that there is a 
problem in a family member of a celiac without confoirmation. 
I frequently see people who have already stared on the diet who after a 
variable lenght of time want to find out mostly because the diet is not 
all that easy especially if you're not a 100% sure yopu need to be on it. 
The diagnosis is much more complicate in someone already on a gluten 
restricted diet, the findins may be equivocal and hard to interpret. 
Blood are less reliable on a gluten free diet. 
In older individuals other more serious co=nditions may be missed like 
cancer of the bowel.  Other disease are also more prevalent in family 
members of celiacs. 
If undertaken in a child without reasonable proof it is quite unfair to 
restrict someone unneessarily. 
I recognise that doctors are often to blame in ignoring or downplaying 
the risk.  The patients who are fanmily members of confirmed celiacs 
should seek a further opinion if their doctor refuses to listen.  This is 
becoming a problem with some of the HMO's in the US who may want to cut 
corners cost wise.  I would be happy and frequently answer physiicans 
concerns or inquires about testing for celiac disease in relatives. 
Joe Murray 
Date:         Tue, 24 Jan 1995 20:19:50 -0600 
From:         "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU) 
Subject:      Re: steatorrhea and celiac disease 
To clarify the meaning of the word steatorrhea, it is indeed the passage 
of smelly, bulky, bouyant, palke greasy stools.  These may be liquid or 
semi formed.  The causes of steatorrhea include 
celiac disease 
pancreatic disease 
other livert diseases 
malabsorbtion due to other causes 
giardia infection 
vasculr disease 
whipples disease 
small bowel crohn's 
and about a 100 other diseases 
kidney disease does not cause it as far as I know 
joe murray 
Date:         Tue, 31 Jan 1995 10:53:07 PST 
From:         "Donald D. Kasarda" ( 
Subject:      small amounts of gluten 
)I've seen that this coloring can contain gluten, but if it's a small 
)change of trace contamination to a minor ingredient, I'm wondering if this is 
)a real risk to someone without an extremely sensitive gluten intolerance. 
)Has anyone had good or bad reactions to eating this cereal?  -- David Scheim 
Ejderhamn et al. (Karolinska Institute, Stockholm) report (in Coeliac 
Disease:100 years, Eds. P. J. Kumar and J. A. Walker-Smith, Leeds, 1988, pp. 
294-297) that, "There was no evidence of small intestinal mucosal damage in 
our patients with coeliac disease, who had been on wheat starch-containing 
gluten free products for a mean of 14 years and for 10 years after the 
diagnosis was confirmed..  The gliadin content in their gluten-free products 
exceeded 1 milligram/100 grams flour." 
Additional comments by me:  This study included counting of intraepithelial 
lymphocytes, considered a highly sensitive indication of harmful effects 
from gliadin/gluten.  Daily gliadin intake was considered to be between 4 
and 8 milligrams.  Eleven patients were studied. 1 milligram/100 grams had 
been proposed as the new upper level standard for gluten-free products in 
the Codex alimentarious. 
Donald D. Kasarda 
Date:         Tue, 31 Jan 1995 14:24:00 -0800 
From:         Ann Herman ( 
Subject:      Re: antibody tests/biopsy 
Dear Diane Boyd and celiac list- 
I read your mailing on your daughter's lack of an antibody response.  I am a 
graduate student at Stanford in immunology, and although I do not do research on 
celiac sprue, I understand more of the immunologic background of the disease 
from my studies.  I have done some library research in this area due to my own 
interest in the disease since I have it.  I also had very "atypical" symptoms 
before diagnosis, but I think that what is medically considered "atypical" 
probably isn't so unusual in the real disease course.  My gastroenterologist 
says he has diagnosed one person whose only symptom was depression, and another 
whose only symptom was impotence.  We may not tell our doctors every symptom if 
we have a lot or think that they are unrelated to our condition.  Especially 
with children it may be difficult for them to describe a certain symptom. 
Since celiac disease is an inherited condition, I would highly recommend that 
you put your second daughter on a gluten-free diet as well.  I find it hard to 
believe that one child could have been positively diagnosed with celiac and the 
other child merely has "irritable bowel syndrome," which at this point the 
medical community believes is caused by stress.  This is probably unlikely for a 
10 year old girl. 
In regards to the negative antibody test, it is more likely to get a false 
negative on a test like this than a false positive.  That is why the antibody 
test is very useful in a positive diagnosis, so if the results are positive you 
may not need to go ahead with the biopsy unless you want absolute proof.  In the 
case of a negative result, however, this does not say that you do not have 
celiac disease.  It merely says that you are not producing a detectable number 
of antibodies. 
Celiac disease is a T cell mediated disease.  For poorly understood reasons, the 
body's own immune cells called T cells begin to attack the cells lining the gut 
when these gut cells are exposed to gliadin from our diets.  One of the 
consequences of these T cells becoming activated to do this damage is that they 
release factors that cause other immune cells to release antibodies, some of 
which end up in our blood.  It is these antibodies that are measured in the 
test.  From the current understanding of these types of diseases, it appears 
that these antibodies are probably not necessary for the disease to occur, but 
are instead a byproduct of the T cell immune response to the gut.  For this 
reason, it may be possible that the T cell damage could go on without seeing any 
antibodies produced.  For these reasons, in your situation I would have your 
daughter get the biopsy or just go straight to a gluten-free diet to see if this 
clears up the symptoms. 
At a Celiac Group of the Bay Area meeting, I heard Don Kasarda speak about 
research in this area he is doing with Martin Kagnoff at UCSD.  He may have a 
comment on this subject if you want to contact him. 
Sorry for the length of this message. Good luck. 
--Ann Herman 
Date:         Tue, 31 Jan 1995 14:38:59 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: Ann Herman/Diane Boyd comments 
I think Ann Herman covered the situation on antibody levels so well that I 
can't think of anything to add. I did wonder which antibody tests were done: 
IgA, IgG, endomysial? 
Also, it might be worth trying again in a few weeks (or even right now) with 
another testing laboratory.  Mistakes can be made once in a while. 
Inconvenient and perhaps expensive, but still perhaps worth doing before 
considering a biopsy. 
Don Kasarda 
Date:         Wed, 1 Feb 1995 00:07:26 -0600 
From:         "J. Murray" ( 
Subject:      Re: CELIAC Digest - 29 Jan 1995 to 30 Jan 1995 
Re dependability of antibody tests to rule out celiac disease as a 
possibility in a family member of a celiac, who has symptoms that are 
suggestive of CD.  The antibody are occassionally wrong.  This happens in 
the best of labs and is related to natural variation or IgA deficency!!. 
It has been my practice to advise consideration of biopsy in family 
members who have symptoms.  Measuring IgA levels might indicate IgA 
deficiency state which would indicate a possible reason for the negative 
test. There would be a variation on one of the tests that could be done 
on the blood sample if the patient was IgA deficient that we have found 
helpful.  That is to do the IgG endomysial antibody test, which is often 
positive in IgA deficient patients who have celiac disease.  Nothing in 
medicine is perfect, even biopsies which are subject to interpretation 
and sampling problems. Joe murray 
Date:         Wed, 1 Feb 1995 00:12:07 -0600 
From:         "J. Murray" ( 
Subject:      Re: CELIAC Digest - 29 Jan 1995 to 30 Jan 1995 
re papain 
If my memory is coorect the reference to papain digestion of gluten was 
in vitro ( in a test tube ) and then the digested substance was given to 
2-3 celiac patients who did not have an obvious symptom reponse. Not an 
acceptable basis for trusting your health to.  I will attempt to refind 
the original article in our library basement.  Joe Murray 
Date:         Wed, 1 Feb 1995 00:21:59 -0600 
From:         "J. Murray" ( 
Subject:      Re: More on antibody tests 
In our experience antibody tests can have both false positives and false 
negatives.  That means that you cannot fully depend on them to make the 
diagnosis.  If all the antibodies ( Iga gliadin IgG gliadin and IgA 
endomysial are positive then it is likely that the person has celiac 
disease.  But that is not always the case.  The tests are not 
standardised either in the lab methods or in interpretation.  The normal 
values vary from age and population.  Joe Murray 
Date:         Wed, 1 Feb 1995 23:53:41 -0600 
From:         "J. Murray" ( 
Subject:      Re: Tax deductibility of medically prescribed special diets 
I am not a tax practiitioner, but My understanding is that the extra 
expenses involved in adhereing to a medically prescribed diet is regarded 
a tax deductible medical expense as defined and limited to those who 
itemise deductions.  Like everything else you who need to keep careful 
record of all extra expenses used to comply with the diet and have a note 
from your doctor stating the necessity for the diet. This recommendation 
may already be contained in the medical record letteres etc.  The celiac 
disease foundation has a handout on it and similar sheets have been 
reproduced in newsletters etc.  Obviously this may not apply outside the 
USA.  Joe Murray 
Date:         Thu, 2 Feb 1995 11:41:33 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Kenmei problems 
There have been several messages related to the demise of Kenmei rice cereal 
by Kellogg.  I had been involved in the attempts by Kellogg to make the 
cereal gluten-free and perhaps some of you might be interested in what took 
place.  One of the problems was that Kellogg felt that they could not afford 
to assign separate machinery and separate work space for the production of 
Kenmei from that which they used with wheat cereals.  They agreed, however, 
that they would thoroughly clean their machines in between the different 
runs and discard a considerable amount of the Kenmei that came through 
immediately after the transition in order to avoid any contamination with 
wheat that could not be completely cleaned from the processing machinery. 
This seemed to work for a while, but I think they may have had some 
difficulties in keeping on top of production staff in regard to these 
procedures and at least once some evidence of apparent contamination turned 
up.  I suspect that these difficulties, along with the fact that Kenmei was 
evidently not a big seller among non-celiacs, caused Kellogg to give up on 
it as a non-profitable item.  This is unfortunate as many celiac patients 
seemed to like Kenmei very  much, but I think you have to see the company's 
side of things.  They really did try to make it work, but a big company has 
trouble adjusting to niche markets. 
Don Kasarda 
Date:         Thu, 2 Feb 1995 17:43:46 PST 
From:         "Donald D. Kasarda" ( 
Subject:      efforts to sell Kenmei 
Having been involved personally, I feel that Kellogg Co. did make rather 
exceptional efforts in regard to Kenmei. They worked closely with me as a 
representative of Phyllis Brogden (Greater Philadelphia) and other celiac 
support group chairpersons (who had requested that I represent them to 
Kellogg) and the Kellogg's people kept me pretty well informed. I had ready 
access at the Vice-Presidential level. My telephone calls were never turned 
away. In regard to marketing efforts, I recall full-page, four-color adds in 
major magazines and advertising supplements.  And they put Kenmei on 
practically every supermarket shelf in the country.  I think that costs some 
money.  After all, Kellogg is not a non-profit organization. If you happen 
to own shares (I don't--I haven't any connection whatsoever with the 
company), or your mutual fund does, you probably hope the company makes some 
profits. In my opinion, there is a limit to what can be expected of a 
company competing on the open market with regard to responsiveness to 
special problems like celiac disease.  In the ordinary course of things, 
they wouldn't think twice about killing a product that wasn't doing well. 
In the case of Kenmei, I would say they did at least think twice. 
Don Kasarda 
Date:         Mon, 6 Feb 1995 11:37:19 -0500 
From:         Ivor Dennis Hill ( 
Subject:      Re: childhood Celiac vs. Growth 
Isolated growth failure is now well recognized as an early manifestation 
of celiac disease. Studies on children attending clinics for short 
stature have shown that as many as 10% of them have celiac disease. 
Providing the condition is diagnosed and correctly treated before 
puberty, the children will show good catch up growth. If left untreated 
until after puberty there will be some permanent effect on the height of 
the individual. 
On Mon, 6 Feb 1995, Karen Bulmer wrote: 
) Just a curiosity as to whether any studies have been done in regards to 
) children diagnosed with Celiac disease and they growth patterns before and 
) after.  I was never diagnosed as a child and I am short for my family. 
) Older brother 6'5", younger sister 5'11", me 5'6". Mother 5'9", father 
) 6"....Anyone else have or know of similar problems pre and post diagnosis? 
Date:         Wed, 8 Feb 1995 10:19:26 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: Gluten in Skin Products 
Amy said: 
)This may sound strange, but as a fairly new Celiac I'm trying to absorb all 
)this information and I have one question about non-food items.  I thought CD 
)was a intestinal problem with gluten getting in to the intestine and 
)damaging the villi.  Now, how does a skin care product affect the intestine, 
)if it were absorbed thru the skin, wouldn't it be in the bloodstream?  Maybe 
)someone could help me understand this. 
In reply: 
I am not personally aware of any published evidence that gluten exposure by 
way of the skin is harmful to celiac patients. I think this concern has no 
more factual basis than the harmful peptides or proteins in grain alcohol 
story. In previous postings to this list, some celiac patients reported 
kneading wheat flour doughs and baking wheat bread for non-celiac family 
members without noticing any effects or problems.  There may be people with 
allergies to wheat or wheat products that show up as a skin response, but 
this is not likely to be the same as celiac disease.  In the absence of 
solid information showing harmful effects from gluten containing skin 
products, it is difficult for me to understand why they should be avoided by 
celiac patients. 
Donald D. Kasarda 
Date:         Wed, 8 Feb 1995 23:30:32 -0600 
From:         "J. Murray" ( 
Subject:      Re: dapsone dosage 
What is a,safe dose of dapsone?  The most common side effects of dapsone 
are on the blood cells specifically the red cells It can break them up ( 
hemolysis) or if can interefere with their ability to carry oxygen. 
While there are other side effects ( skin rash, nausea, liver dysfunction 
bone marrow effects theese are rarer)  The lowest dose that controll the 
rash is the best dose.  Adhereing to a gluten free diet will reduce the 
requiremnet over about 2 years to the point that many peolpe will be able 
to stop it altogether,  Need to be a strict diet.  While some one is on 
dapsone they need to have regular blood counts and liver blood tests to 
check for side effects.  There are other drugs that are sometimes used 
but these also have their side effects.  Joe Muuray 
Not specific medical advice but an educational service- consult your 
Date:         Wed, 8 Feb 1995 23:39:36 -0600 
From:         "J. Murray" ( 
Subject:      Re: Growth and celiac disease 
Celiac disease may inhibit childhood growth and some times that is the 
only sign of it.  It can also not inhibit growth in height but make 
skinny kids or in some cases you can have some quite tall celiacs.  The 
tallest celiac ( not diagnosed until 34yrs was 6' 8" and tallest female 
was 6' 3".  The heavyiest untreated patient was 400 lbs with most of my 
patients being normal or overweight at the time of diagnosis.  The 
nutritional impact of celiac disease depends on many factors both the 
extent and duration of the damage the ability of the body to compensate 
for the defect and dietary compensation. 
The growth patteerns can raise the suspicion of celiac disease but a 
normal growth pattern should put the doctor off either.  The adage " you 
cant have that because you are too tall or too heavy" is wrong. 
Joe Murray 
Date:         Wed, 8 Feb 1995 23:51:47 -0600 
From:         "J. Murray" ( 
Subject:      Re: Discrepancy between antibody tests and biopsies 
These descrepancies are of two, types 
1. Blood test positive - biopsy negative: the antibody tests could be 
false positive ( some times happens especially with gliadin IgG ) , the 
antibody test may reflect a latent gluten sensitivty that ha s not done 
any damage ( by definition this individual should have no symptoms), or 
the biopsy is wrong because of too small a sample , just one taken , or 
an error in interpretation due to lack of awareness on the part of the 
pathologist of subtle changes of celiac disease ( marsh MN , 
gastroenterology, feb 1992.  ) 
2. Blood test negative and biopsy positive:  the blood test might have 
preformed incorrectly or if gliadin alone is used it does not pick up all 
celiacs. The blood test may also go negative if gluten has been reduced 
in the diet before it is drawn.  If the patient is IgA deficient it 
will often be negative.  The other possibility is that it is not celiac 
disease on the biopsy there are some other things that can mimic celiac 
disease on biopsy. 
All in all no tests are perfect 
Joe Murray 
Date:         Mon, 13 Feb 1995 14:40:16 -0500 
From:         Ivor Dennis Hill ( 
Subject:      Re: Antibody Test Reliability 
In response to your request for information on laboratories performing 
serological tests for Celiac disease - our Division of Pediatric 
Gastroenterology and Nutrition at the University of Maryland School of 
Medicine in Baltimore has a certified clinical laboratory offering a 
variety of specialized investigations for disorders of the 
gastrointestinal tract. Included in these are the antigliadin IgA & IgG 
and antiendomysium antibody tests. For those wishing to use the 
laboratory, the contact person is  Dr. Karoly Horvath, (Laboratory 
director) - phone # (410) 706 1997. 
Date:         Mon, 13 Feb 1995 21:43:10 -0600 
From:         "J. Murray" ( 
Subject:      Re: Digestion of Fats 
Fat malabsorbtion in celiac diasese is due to a combination of effects of 
celiac disease.  These include loss of the surface that is needed to 
absorb fat, loss of digestive enzymes that would be produced by the 
lining of the intestine.  The enzymes produced by the pancreas may also 
be reduced by the degree of malnutrition of the individual.  Motility( 
contractions of the intestine may also be increased ( or decreased ) in 
patients with celiac disease because of the infllammation.  All of these 
factors come together to impair the ability of the intestine to handle 
fat.. All of these should also correct with the healing response to a 
gluten free diet.  Occassionally there may be a need to add pancreatic 
enzymes to help with digestion.  I have also on occassion have to give a 
mediaction to aid gastric emptying. 
Constipation has been desrcibed as affecting 20% of new celiac 
patients..  In my experience this may be due to the passage of large 
stools and cramping in some, while others will have typical constipated 
stools with hard stools passed every 4-5 days.  This can sometimes get 
better with the diet but sometimes it can get worse due to a lack of 
fibre.  The use of pure rice bran apples pears and a small amount of 
prunes can help.  Never ever use Gluten as a laxative. 
Rarely a condition called pseudoobstruction can coexist with celiac 
disease.  This is the most severre type of constipation and needs very 
special attention. It is much rare than celiac disease. 
The fat malabsorbtion is associated with specific fat-soluble vitamins 
defeciencies such as Vit A, D, E and K.  These usually correct with a 
gluten free diet, but sometimes need specific suppplements. 
On Sat, 11 Feb 1995, ROSALIE JALBERT wrote: 
) Besides lactose intolerance, could you tell me more about problems with 
) digestion of fats. Could it cause a mobility problem or constipation? 
Date:         Tue, 14 Feb 1995 13:03:56 -0600 
From:         "J. Murray" ( 
Subject:      Re: Man with autoimmune diseases and family hx of CD/DH 
I can only comment on a hypothetical man as described who has a parent 
with DH and has GI symptoms and other autoimmune diseases. 
He should insist in as clear a manner as possible that he be specifically 
investigated for celiac disease.  He not only has a family history but 
has other associated symptoms.  This should be done before going on a 
gluten free diet.  While blood tests ( antigliadin and endomysial 
antibodies could be done first, I would be biopsying this type of 
individual. Joe Murray Iowa 
Date:         Tue, 14 Feb 1995 13:28:09 -0600 
From:         "J. Murray" ( 
Subject:      Re: re antibody testing sites 
In response to the query ?recommended labs for testing 
The Univ of Maryland ( see recent message from Ivor Hill 
Dr. Kumars lab in buffalo NY 
specialty LAbs santa monica do a lot 
Some other large labs do them even though it is not clear which method or 
if they further contract them out. 
And of course they are available through  our immunopathology laboratory 
at the University of Iowa. 
Joe murray iowa 
Date:         Tue, 14 Feb 1995 13:35:51 -0600 
From:         "J. Murray" ( 
Subject:      Re: How to persaude your doctor to test for CD 
If there is a strong family history of celiac disease, point out that you 
have heard from a specialist speaking at a meeting, or writing on the 
interenet or in a newsletter that this does run in familys.  If you get 
the response that you could just go on the diet, point out that that was 
specifically not recommended. 
If the Dr. is just plain uncooperative seek another opinion.  If it is a 
HMO and you dont have any choice, write the quality assurance dept of the 
HMO asking for their intercession. 
It is quite difficult to ignore a patient who is very specific in their 
information and requests. 
If you have written information about celiac disease bring it with you to 
your dr's visit. 
And Good Luck 
Joe Murray Iowa 
Date:         Tue, 14 Feb 1995 13:15:33 -0600 
From:         "J. Murray" ( 
Subject:      Re: permeability tests as a screening test for celiac disease 
The reference to the use of permeability in the diagnosis of celiac 
disease is interesting.  However it is important to put it's usefulness 
into context.  It detects increased intestinal permeability which is seen 
in most untreated celiac patients.  However other diseases frequently 
give rise to the same increase in permeability.  Hence I feel that the 
utility of the test needs to be put in the context of the clinical 
Is a family member at risk of having CD also? 
How is someones CD doing on a GFD? 
These questions above may be answered by measuring permeability. 
The question " does this patient have celiac disease?" is not answered by 
detecting increased permeability. 
Biopsy remains the standard. 
Gliadin antibodiess ( esp IgG) can be seen in other diseasees. 
Endomysial antibodies seem to more reliable than gliadin and rarely occur 
in oter diseases( Note : this conclusion is based on our experince in 
Iowa and published series from research labs in europe>  We do not know 
how good( reliable ) this test will be in general usage, as more and more 
labs start doing it. Joe Murray Iowa 
Date:         Thu, 23 Feb 1995 19:49:21 -0600 
From:         "J. Murray" ( 
Subject:      Re: Comments on comercial foods lists 
While by and large these lists are quite helpful one must exercise 
vigilance especially when it comes to foods that are going to be eaten in 
large amounts or often.  If you are planning on eating something on a 
regular basis you must not only ensure that it gluten free at the outset 
but recheck it every 2-3 months.  Things change. 
For large lists such as the CSA/USA lists especially if they are garnered 
from many individuals efforts will have occassional mistakes either 
because the company rep did not understand what GF was exactly ( may have 
the bakers definintion of gluten or not not considered barley as "gluten" 
Oats and oat flour are best avoided as a routine food ingredient for 
celiacs.  Joe Murray Iowa 
Date:         Thu, 23 Feb 1995 20:02:41 -0600 
From:         "J. Murray" ( 
Subject:      Re: Fibre supplements 
I have recently met someone who had problems with citrucel and 
metamucil given as fibre additives causing a continued problem with 
diarrhea.  She told me that when she called the citrucel co. first that 
it was gluten free.  after several weeks of symptoms she tried again and 
this time they told her was a little gluten but it probably did not 
matter. She then went on metamucil which caused a similar problem.  This 
was the orange flavored "smooth textured metamucil, whose ingrediant list 
had 95% pysllium seed.  and some other colors and natural flavors.  I 
wonder what the other 5% was.  Since stopping the metamucil her symptoms 
have stopped.  I suspect that this was called the sunrise smooth variety 
of metamucil which I used to tell people to avoid that type.  It seems 
that now the sunrise part of the label is no longer being used. 
My advice if you need supplemental fibre use apples pears and rice bran 
as reasonable and safe sources of fibre. 
Has anyone else had experiences with these agents. 
Also as with all mediacation if one dose size of a tablet is GF does not 
mean that every dose size will be also.  For example 
Biaxin ( a new and expensive antibiotic) the 250mg tablet has 
pregelatinised starch as an ingredient ( which may be wheat derived) 
whereas the 500mg does not. One form of the solution may alo have gluten 
in it also. 
Joe Murray Iowa 
Date:         Thu, 23 Feb 1995 20:05:01 -0600 
From:         "J. Murray" ( 
Subject:      Re: myasthenia gravis 
The association between the myasthenia gravis and celiac disease is due 
to the fact that they both occur in people with a predisposition to 
autoimmune diseases. Joe murray 
Date:         Mon, 27 Feb 1995 16:54:15 PST 
From:         "Donald D. Kasarda" ( 
Subject:      buckwheat and millet 
Selected comments from communication of Laura Johnson-Kelly 
)However, I think it is wise for doctors and other dietary specialists 
)to point out that many celiacs do have problems with millet and 
)buckwheat, just as they point out that many celiacs have problems with 
)lactose intolerance.  Maybe these foods do need to be removed from the 
)"never eat" lists to the "eat at your own risk" lists, along with dairy 
)products, to allow for these individual differences.  Saying that people 
)"shouldn't" react to eating millet and buckwheat when some obviously do is 
)too terribly reminiscent (at least to me) of the doctors who say that an 
)individual can't possible have cd because it is such a rare condition, or 
)the individual doesn't show stunted growth, etc. etc. 
Response from Don Kasarda: 
I would mainly be concerned about an implication that responses to 
buckwheat and millet (an implication that I do not attribute to Laura) 
have something to do with celiac disease. They may or may not, but 
there is no scientific evidence that they do and some that they do 
not--at least for buckwheat.  People of all sorts are sensitive to all 
sorts of things.  I feel that celiac patients should be wary of 
attributing all their own personal sensitivities or problems to their 
celiac disease. For example, lactose intolerance is certainly a problem 
for many people who don't have celiac disease.  I suspect that because 
of somewhat indiscriminate testimony, large numbers of people with 
celiac disease are avoiding many foods that are harmless for them. 
Perhaps some sort of disclaimer would be helpful:  "I have a problem 
with this or that food.  I don't know if this has any connection with 
my having celiac disease.  It may or may not, but you may want to watch 
out for it." 
Along these lines, I think it would be appropriate for any celiac 
organization that puts out a list of foods to be avoided to have some 
sort of justification on file for each food proscription on the list 
and be prepared to make that justification public upon request.  I 
don't think the fact that several people said they had a problem with 
eating "X" is sufficent. If it is NOT possible to say at the very least 
that 100 people or more (preferably more) with biopsy-defined celiac 
disease (perhaps these days, antibody-defined might be acceptable) were 
polled randomly and 20%, or 50%, or 90%, whatever, said they had a 
problem with X, then X should not be on the proscribed list. The grain 
alcohol/white vinegar proscription is one example where I doubt there 
is any justification.  Conversely, if an organization cannot offer any 
public justification for a proscription, then it should remove the item 
from its list or put it in a "possible concern" category. 
I have no problem with scientific studies of buckwheat, millet, or any 
other suspect food in relation to celiac disease, but properly done 
studies are enormously expensive and the problem of finding a suitable 
number of well-characterized celiac patients to participate in any 
study is great (they would almost certainly have to submit to several 
biopsies and be followed closely for months).  Accordingly, I am not 
too optimistic about such studies being carried out. 
Date:         Wed, 1 Mar 1995 10:06:42 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: The Danger of Relying on Symptoms 
Extract from communication by Jim Lyles: 
)However, ALL celiacs will have villi damage when they ingest gluten, 
)whether they feel anything or not.  If it is only a small amount of 
)gluten, then there is only a small amount of damage, but the damage 
)occurs none-the-less. 
May we have your references to the medical literature for this statement? 
I have posted a reference to the contrary on the list. 
Don Kasarda 
Date:         Fri, 3 Mar 1995 12:15:06 PST 
From:         "Donald D. Kasarda" ( 
Subject:      gliadin amounts 
Some comments from Don Kasarda (Albany, CA) on continuing discussion 
about whether or not small, perhaps trace, amounts of gliadin are harmful 
to celiac patients. 
First of all, I thank Jim Lyles and Peter Hyatt for their thoughtful, 
well balanced statements.  There is much key information we don't have 
yet and even professionals differ in their opinions.  I have no problem 
at all with people making informed decisions about what they are willing 
to risk or not risk in the way of foods.  I certainly would not encourage 
anyone to cheat on the diet, but when it comes to malt flavoring and 
wheat starch and white vinegar, I think there is room for a decision to 
risk it, at least once in a while. 
Just as an example, let us consider the cancer question.  The studies 
carried out in England indicated an increased risk of lymphoma (small in 
absolute terms, but nevertheless a significant rise over background) in 
celiac patients who do not follow a gluten-free diet or who cheat 
regularly.  In the control group, on a strict gluten-free diet there was 
no increased risk.  Yet, because, during the period of this study, wheat 
starch was considered an allowable part of the celiac patient's diet in 
England, the control group on a strict gluten-free diet was very likely 
eating one-to-ten milligrams of gliadin per day.  This study involved 
hundeds of patients.  I wrote some time ago to Dr. Holmes (the senior 
author of the study) asking him if he agreed with my analysis. 
Unfortunately, he hasn't replied.  But I would be interested to hear 
comments from those in England familiar with the recommended diet in the 
1970's and 1980's. 
There is a seemingly good study carried out in Switzerland showing that 
ingestion of wheat starch over a period of years was not harmful in the 
small group (12) of patients studied.  There may well be people with 
higher sensitivities who just didn't end up in the experimental group. 
The amount of gliadin (strictly speaking, hordein peptides) that might 
end up in barley malt flavoring is small, and not likely to be more risky 
than eating wheat starch.  Personally, I think the attitude in the UK 
towards foods is the more realistic one and that the US attitude is too 
extreme, but that is obviously an opinion.  Anyway, from my analysis of 
the literature, if you decide to eat Rice Krispies, or MacDonald's french 
fries, or white vinegar, you are on about as firm ground as the people 
who choose not to.  The solid information just isn't there in my opinion. 
I know some physicians will take issue--they tend to follow the old 
adage, "Give 'em an inch and they'l take a mile, " and probably figure 
you will be putting croutons on your salads before long if they don't 
scare you thoroughly.  As usual, each person must make his or her own 
decision.  I would just like to have that decision made in as informed an 
atmosphere as possible. 
Finally, just to roil the waters even more, the latest studies of oats 
(by Irish and Finnish groups) seem to be coming up non-toxic!  The 
results have not been published yet, but from what I have been told, they 
seem to have been carefully done.  So the scorecard on oats is:  one 
seemingly good study (although no biopsies) says toxic, and two other 
seemingly good studies (that included biopsies) say non-toxic.  (This 
doesn't include the Finnish study about which I have no experimental 
Date:         Tue, 7 Mar 1995 17:24:43 -0600 
From:         "J. Murray" ( 
Subject:      re speed of gluten reaction 
Food ingested starts to reach the small intestine after only a few 
minutes.  Most food eaten is in the small intestinine in just 3-4 hours. 
Individuals vary in the speed of the gluten reaction.  In some of the 
acute challenge studies in the UK changes were evident inside a few 
hours. Others have delayed reactions days or no acute reactrtion at all. 
Joe Murray 
Date:         Tue, 7 Mar 1995 17:19:36 -0600 
From:         "J. Murray" ( 
Subject:      re MS and celiac disease 
The coincidence of MS and CD in 2 sibs of one family may be just that a 
coincidence in a family possibly with a predisposition to autoimmune 
disturbances.  There is however the other possibilty that is that the MS 
patient sufferes from a neurologic complication of undiagnosef CD. 
about 5% of CD 
patients get nerve damage that can vary from tingling and numbness in the 
feet to confusion, memory loss, dizziness and loss of balance, visual 
abnormalities.  Thes sometimes happen in the absence of GI symptoms.  Any 
sibling of a person with celiac disease should be screened for celiac 
disease. it's a long shot that neurological problems would be due to a 
covert case of CD but IT should be checked none the less. 
This is not specific medical advice. joe murray 
Date:         Wed, 8 Mar 1995 11:15:53 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: "Glutinous" Rice Flour? 
)I know glutinous rice flour = sweet rice flour, but why is 
)the term "glutinous" (which means gluey or sticky) used?  It 
)certainly gives pause to those of us with a search image for 
)gluten when reading labels. 
)David Kesler 
Reply from Don Kasarda, Albany, CA. 
Just one of those things.  Gluten is sticky--same meaning, I guess, but 
the term glutinous rice does not imply wheat gluten.  Another confusing 
usage is corn gluten for proteins of corn (maize).  Traditionally, since 
the 18th century, gluten is the elastic, cohesive ball of protein 
remaining after starch is washed away (by kneading in a stream of water) 
from a dough.  This can be achieved effectively only with wheat.  It 
doesn't even work well for rye.  It doesn't work at all for barley and 
corn.  Yet gluten-free for celiac patients has come to mean free of any 
grain that has harmful peptide sequences in its proteins.  It seems 
strange when a celiac patient asks me how much gluten there is in, say, 
amaranth.  For a cereal chemist, that question requires translation into, 
"Are there peptide sequences in the proteins of amaranth that might cause 
damage in celiac disease."  There is certainly no gluten in the 
traditional sense. 
Date:         Wed, 8 Mar 1995 11:00:40 GMT 
From:         William Elkus (Maxwell@LAMG.COM) 
Subject:      Gluten in Breast Milk? 
In the post from the Sprue-nik Press, it said: 
)Dr. Alessio Fasano, University of Maryland 
)A question was raised: Can a baby receive gluten through breast milk? 
)Dr. Fasano stated that it has never been described that gluten can go 
)through breast glands 
Although I have never read the journal articles myself, Dr. Kalle 
Reichelt, a Norweigan researcher,has cited several articles as evidence 
that dietary proteins in general, and gluten/gliadin specifically, can be 
transfered to a breast-fed baby: 
The following is from a post written by Reichelt to another internet 
discussion group, but if you do a CELIAC archives search on 'reichelt' 
you will find very similar posts on our own discussion group: 
) proteins can be demonstrated in mothers milk (3-6) as intact 
) proteins. This could easily therefore take place also during pregnancy. 
) 3: Kilshaw PJ and Cant AJ (1984) The passage of maternal dietary 
) protein into human breast milk. Int Arch Allergy and Appl 
) Immunol 75: 8-15. 
) 4: Axelsson I, Jacobsson I, Lindberg T, and Benediktsson B (1986) 
) Bovine lactoglobulin in human milk .Acta Paed Scand 75: 702-707. 
) 5: Stuart CA, Twiselton R, Nicholas M and Hide DW (1984) Passage 
) of cow s milk protein in breast milk .Clin Allergy 14:533-535. 
) 6:Troncone R, Scarcella A, Donatiello A, Cannataro P, Tarabusco A and 
) Auricchio S (1987) passage of gliadin into human breast milk . 
) Acta paed Scand 76: 453-456. 
Since Ihave not read the articles, I have no idea whether the amounts of 
these proteins would be sufficient to trigger a Celiac (or other 
autoimmune) response in a susceptible child. 
If anyone makes a copy of these articles and is willing to fax or mail me a 
copy, please email me privately, as we are expecting another baby soon. 
Bill Elkus 
Date:         Thu, 9 Mar 1995 08:28:38 -0600 
From:         "J. Murray" ( 
Subject:      MS and celiac disease 
The coincidence of MS and CD in 2 sibs of one family may be just that a 
coincidence in a family possibly with a predisposition to autoimmune 
disturbances.  There is however the other possibilty that is that the MS 
patient sufferes from a neurologic complication of undiagnosef CD. 
about 5% of CD patients get nerve damage that can vary from tingling and 
numbness in the feet to confusion, memory loss, dizziness and loss of 
balance, visual abnormalities.  Thes sometimes happen in the absence of 
GI symptoms.  Any sibling of a person with celiac disease should be 
screened for celiac disease. it's a long shot that neurological problems 
would be due to a covert case of CD but IT should be checked none the less. 
This is not specific medical advice. joe murray 
Date:         Thu, 9 Mar 1995 13:41:28 GMT 
From:         William Elkus (Maxwell@LAMG.COM) 
Subject:      Fwd: Trace amount of protein in milk. 
)From Dr. Reichelt in reply to my post yesterday, in which I wondered 
)whether the amounts of gluten in mother's milk is significant: 
It should be stressed that the amount are small.  However, the point is 
that even trace amounts can be important because if the proteins are not 
properly broken down peptides will accumulate.  After all the uptake of 
proteins from the gut into blood has also been demonstrated:Husby et al 
(1985) passage of undegraded dietary antigen into the blood of healthy 
adults .Scand j Immunol 22:  83-92. 
Other references in brief : 
Bloch KJ et al (1979) gastroenterology 77:1039-1044. 
Thomas et al (1974)Immunology 27:631-639. 
Walker WA et al (1974) gastroenterol 67: 531-550. 
Because gluten contains at least 15 opioid sequences per molecule 
(Fukudodme S-I and Yoshikawa M (1991) Opioid peptides derived from wheat 
gluten :Their isolation and characterization .FEBS Letters 296:107-111.) 
It is therefore clear that one molecule could theoretically give 15 
opioids .  This means that trace amount of peptide could quickly become 
very important. 
Cheers                          Tiny 
K. Reichelt 
Pediatric Research Institute 
N-0027 Oslo, Norway 
Tel: +47 22 86 90 45 
Fax: +47 22 86 91 17 
Date:         Fri, 17 Mar 1995 11:48:21 PST 
From:         "Donald D. Kasarda" ( 
Subject:      millet 
Reply to query from Jim Lyles by Don Kasarda (USDA not FDA), Albany, CA. 
Perhaps some background information on my qualifications to comment would 
be helpful.  I am a cereal chemist who has worked primarily on wheat 
proteins in relation to wheat mixing and baking quality for the past 30 
years.  Through collaborations with various medical groups over the past 
25 years I have become somewhat familiar with celiac disease, 
particularly as it relates to grain proteins.  I have attended three of 
the five major international celiac disease symposia that have been held 
during the past 25 years, including the last in Dublin, Ireland, held in 
My position on millet is stated in the grains letter that many of you on 
the list have requested (and, I hope, received).  Evidence so far on 
millet proteins (also millet taxonomy) indicates that millet proteins are 
closely related to corn proteins.  If corn is accepted as a safe grain, 
then millet is likely to be safe as well.  Of course, millet proteins 
have not been studied as extensively as corn proteins, so if you are 
extremely conservative, you may wish to avoid millet, but I am not aware 
of any evidence that indicates likelihood of toxicity for millet in 
celiac disease.  I would very much appreciate hearing from CSA 
representatives as to why they include millet on the forbidden list.  As 
for any food, millet may not agree with everyone, but I don't know of any 
evidence that would link millet to celiac disease. 
I think it would be desirable for celiac patients to be aware that many 
restrictions have no scientific basis--that there doesn't seem to be any 
scientific evidence to back them up (wheat-based distilled alcohol, for 
example).  I do not say that anyone should not act on his or her own gut 
(if you will pardon the expression) feelings, but in counseling others, I 
think it should be made clear whether a recommendation has some 
scientific basis or is mainly opinion.  Granted, opinion might some day 
turn into scientific fact--then again, it might not. 
Scientists are far from understanding all the complexities of celiac 
disease and conditions that may or may not be related to celiac disease 
(for example, allergy-like symptoms from breathing grain dust).  Also, 
there is no grain for which we have complete sequence information for 
every protein, including rice and corn.  I can only provide my personal 
opinion based on my knowledge of the scientific literature, which is far 
from perfect given the enormous amount of information accumulated there. 
I do, however, make considerable effort to keep up with the literature on 
both cereal grains and celiac disease.  My comments must be considered in 
that light as general information and not specific medical advice to 
Date:         Fri, 24 Mar 1995 10:40:15 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: Communion Wafers 
)Does anyone have a source or a recipie for GF communion wafers?  Our 
)son's First Communion is coming up on May 7th. 
See the American Celiac Society newsletter, vol.  2, 1994.  If you can't 
find it, I will make a copy and send it to you.  E-mail me directly with 
your address.  The wafers are made with wheat starch (the church seems to 
require that the wafers be wheat-based) and there is a very small amount 
of residual gluten present, but they would be a great improvement over 
the normal wafer. 
Don Kasarda ( 
Date:         Mon, 27 Mar 1995 17:53:34 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: Wheat intolerance vs. CS 
Reply to Linda Blanchard from Don Kasarda, Albany, CA. 
Some of your questions are not easy to answer, at least for me.  There 
may or may not be a difference between wheat intolerance that shows up 
mainly through intestinal damage and celiac disease.  However, both milk 
and soy have been shown (scientific journal articles) in at least a 
couple of instances to produce the flattened mucosa (damaged epithelium) 
that is characteristic of celiac disease.  Does this mean that milk and 
soy allergies (?)  are no different from celiac disease?  So, it at least 
seems possible that there may be two different disease mechanisms at work 
in the case of gluten damage to the intestine, one that represents true 
celiac disease and the other, a form of wheat allergy, the latter 
response perhaps mediated by the IgE class of immunoglobulins (usually 
involved in allergic reactions), which is not usually thought to be 
involved in celiac disease responses.  Perhaps, the former cannot be 
outgrown and the latter can be.  I don't know the answer--just noodling 
around.  I am not an immunologist so someone more sophisticated might 
care to comment. 
Your question about beer is easier to answer.  Beer may have barley 
hordein peptides; these are equivalent to wheat gluten (gliadin) 
peptides.  Beer is not distilled as is alcohol--what ferments and becomes 
soluble in water (and dilute alchohol) is what you get.  So when the 
fermentation process breaks down the proteins of the barley into small 
pieces (polypeptides or peptides), some of those small pieces may still 
be big enough to contain the harmful amino acid sequence(s) that cause 
damage to the intestine of celiac patients.  I would say this is pretty 
likely in most beers, but at present a clearly toxic peptide sequence 
derived from beer has not been described in the literature (just a 
cautionary note and not to be taken as indication that such a peptide 
isn't there).  In addition, these peptides are much more soluble than the 
parent proteins.  The heavier and more tasty the beer, the more likely it 
is that it contains harmful peptides.  There is a recent paper 
demonstrating gliadin-like (probably harmful) sequences in malted barley 
(Ellis et al.  1994.  Demonstration of the presence of coeliac-activating 
gliadin-like epitopes in malted barley.  Int.  Arch.  Allergy Immunol. 
104:308-310).  Also of interest is the paper by Kauffman et al.  (1994. 
Immunological characterisation of barley polypeptides in lager foam.  J. 
Sci.  Food Agric.  66:345-355). 
Date:         Fri, 31 Mar 1995 10:14:40 PST 
From:         "Donald D. Kasarda" ( 
Subject:      Re: Arsenic Disease 
))Norman Dewar (ndewar@BUD.PEINET.PE.CA) wrote: 
))This may seem a trivial question but why is the word disease 
)) used in connection with celiac.  Personally I feel I have a live 
)) long condition but I don't have a "disease" .  It isn't in many 
)) ways a disease in the typical sense of the word. 
Comment by Don Kasarda, Albany, CA 
The term 'gluten-sensitive enteropathy" was coined, I think, by Dr. 
Warren Strober of NIH, Bethesda, MD, some years ago and is fairly popular 
amongst physicians.  In many ways, it is a more descriptive term. 
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