This file contains postings made by the following professionals:
Dr. Karoly Horvath--an associate professor of pediatrics ath the
University of Maryland at Baltimore. Dr. Horvath set up the
Pediatric Gastrointestinal and Nutrition Laboratory, and is
now director of this lab.
Donald Kasarda--a grain specialist working for the United States
Department of Agriculture.
Dr. Vijay Kumar--President of IMMCO Diagnostics.
Dr. Markku Maki--Professor of Pediatrics at the University of Tampere
in Finland.
Dr. Joseph Murray--a gastroenterologist at the University of Iowa,
USA, where they have a mutidisciplinary service for the clinical
care of people with celiac disease. They are also involved with
clinical research and medical education related to celiac disease.
Dr. Kalle Reichelt--involved in research in Norway. He is looking
into the impact of gluten intolerance on certain individuals with
developmental delays.
Paul Shattock--Senior Lecturer in Pharmacy, Autism Research Unit,
School of Health Sciences, University of Sunderland; Sunderland,
England. He is doing research on the relationship between
gluten/casein and autism. His work has application to other
developmental and mental disorders.
=========================================================================
Date: Tue, 3 Oct 1995 15:26:48 EDT
From: Jim Lyles (lylesj@CADCAM.ATG.GMEDS.com)
Subject: CD and Birth Defects--Two Experts Respond
As a result of the discussion a few weeks ago on spina bifida and CD,
I sent the following message to the CEL-PRO list, a private list for
professionals treating and researching celiac disease (CD):
* * * * *
Date: September 14, 1995 2:52 pm
There was a post on the CELIAC list recently which suggests a
complication of [untreated] CD of which I had not previously heard.
I'll try to summarize that post:
A young mother, who is quite thin, "...was diagnosed with sprue [CD] in
high school, but she got over it." (This, of course, is nonsense.)
She has a young daughter with spina bifida. The post suggested a
possible link between spina bifida and low maternal folic acid. The
question raised in the post is: Could the spina bifida in the
daughter have been caused by malabsorption of folic acid in the mother
during pregnancy, with the malabsorption being a direct result of
untreated celiac disease in the mother? If that is the case, then we
have a child inflicted with a life-long condition due to untreated CD
during pregnancy. Meanwhile the young mother could easily have
another child, and is apparently unaware that she still has (and
always will have) the sprue [CD] she thought she got over in high
school.
I wonder how many other birth defects relating to nutritional
deficiencies during pregnancy might be caused by celiac-related
malabsorption. Does this connection seem plausible? Are there any
studies comparing birth defects for untreated celiac mothers with
birth defects in the population at large? Could such information be
easily gathered?
I'd welcome any comments you may have on this topic. If there is a
correlation between birth defects and untreated CD, I think it would
be a powerful motivator for celiac women of childbearing age to not
cheat on the diet. People who won't take care of themselves will
often go to extraordinary lengths to protect their current and future
children. It would also demonstrate the importance of screening the
US population for celiac disease, even in the absence of apparent
symptoms.
* * * * *
There were several responses to this message. I received permission
from two of the doctors to widely distribute their responses; these I
will repeat here for you. The first came from Dr. Markku Maki, a
Professor of Pediatrics at the University of Tampere in Finland. He was
one of the speakers at the Baltimore conference. Dr. Maki's response:
* * * * *
From: Markku Maki, MD
Date: September 15, 1995 5:25 am
Jim Lyles wrote:
)The question raised in the post is: Could the spina bifida in the
)daughter have been caused by malabsorption?....I'd welcome any
)comments you may have on this topic.
At the Celiac Disease Study Group in Tampere, we want to respond. We
have discussed this lately and we are going to do an inquiry to the
Finnish Coeliac Disease Society members about this. Dr. Kati Holm has
a case you might be interested in:
The first child of the mother suffered from spina bifida and
meningomyelocele (boy). Two pregnancies that followed resulted in
abortion because of intrauterine diagnosis (confirmed meningomyelocele
at autopsy). During the fourth pregnancy anemia and folic acid
deficiency were noticed. The mother was treated with vitamins, folic
acid and iron. The pregnancy resulted in a healthy girl. After this
there were again several abortions because of detected menigmyelocele.
The mother contacted Dr. Kati Holm (PhD on celiac disease) because of
diarrhea and anemia and subsequently celiac disease screening tests
were performed among other studies. IgA class reticulin autoantibody
tests were positive and a jejunal biopsy revealed the typical lesion
for celiac disease. She was prescribed a gluten-free diet, after
which symptoms disappeared. The iron and folic acid deficiencies
disappeared at the same time as the mucosa recovered. One pregnancy
resulted, without any other therapy, in a healthy child.
All this by chance alone??
Prof. Markku Maki
Institute of Medical Technology
University of Tampere
P.O. Box 607
FIN-33101 Tampere, Finland
* * * * *
The other response came from Dr. Karoly Horvath, Associate Professor
of Pediatrics and director of the Pediatric Gastrointestinal &
Nutrition Laboratory at University of Maryland:
* * * * *
From: Karoly Horvath, MD, PhD
Date: September 17, 1995 5:47 pm
The relation between folate deficiency and neural tube defects is well
documented. Several studies have demonstrated a significant reduction
of neural tube defects in the newborns of folate supplemented
pregnant woman. The risk reduction varies between 58-91%. The
different studies used different supplementation and doses. A recent
review article summarizes the up-to-date information in this subject
(Czeizel AE, "Folic acid in the prevention of neural tube defects",
Journal of Pediatric Gastroenterology and Nutrition 20: 4-16, 1995).
The other association between folate deficiency and absorptive problem
is not questionable, and does not need to be proven.
I do not have any doubt that that the babies of women with
non-diagnosed CD have an increased risk for neural tube defects. We
can collect information retrospectively, however, it will not be easy
and convincing. A prospective study is easier if we found a center
treating mostly children with neural tube defects and we can get blood
samples from the mother shortly after giving birth for folate level
determination and celiac serologic tests.
Karoly Horvath
University of Maryland
* * * * *
Thank you to Drs. Maki and Horvath for sharing their knowledge with us
on this important topic.
--
-- Jim Lyles
-- 200-2214@mcimail.com
-- Holly, Michigan, USA
--
=========================================================================
Date: Fri, 6 Oct 1995 23:42:43 +0100
From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK)
Subject: Re: Vitamin E
I have to say that I don't really know for sure since I do not have any
of the product to hand. I would, however, be very surprised if it did
contain yer-actual yeast as I imagine someone would have checked it out
before now.
If you mail me a small amount I can easily check it out microscopically
and report back.
Paul Shattock
On Fri, 6 Oct 1995, David Taylor wrote:
) Do you think it likely that the Super Nuthera could
) compromise the yeast free diet?
=========================================================================
Date: Mon, 9 Oct 1995 12:11:58 +0100
From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK)
Subject: Re: menstruation, ovulation, and cd
Mary Courtney shared with us her own observations on the effects of the
menstrual cycle on her own gut motility, cramps etc.
As some of you may know, we have been looking at the urinary peptide
profiles of people with autism for some time now but, as in all
experiments, we sometimes get "false positives" from amongst the normal
population. It seems that in some women there is an increase in material
at certain times of the month and we suspect that peptide material is
leaking through the gut wall in greater than normal quantities at this time.
Our results would not (yet) stand up to critical analysis but the trends are
pretty clear.
Basically, our model would support that proposed by your GI specialist
except that we would add that the hormones, as well as affecting gut
motility could also affect gut permeability. These peptides might, in
their turn, cause other effects in the body. Of course, if foods liable
to produce these suspicious peptides (eg gluten containers) are avoided
the problems would be minimised.
We will be looking at this in greater detail over the next few months and
it is possible that the story may collapse when we do. Perhaps I should
not use this forum for such speculation but I thought it might be of
interest. It would be interesting to know whether women who have gone
gluten free have observed any reduction in PMT symptoms.
Paul Shattock
=========================================================================
Date: Mon, 9 Oct 1995 14:43:24 PDT
From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV)
Subject: Re: Cellulose
Cellulose is a carbohydrate polymer of D-glucose. It is the structural
material of plants, such as wood in trees. It contains no gluten protein.
Methyl cellulose is a chemically modified form of cellulose that makes a
good substitute for gluten in rice-based breads and so forth. I think that
methyl cellulose can be purchased from Ener-G foods in Seattle.
Don Kasarda,
Albany, CA
) Sorry if this question has come up before...does anyone know what
) cellulose is? Just noticed it on another posting saying it was
) "safe." Thank you.
=========================================================================
Date: Mon, 9 Oct 1995 23:49:12 +0100
From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK)
Subject: Re: menstruation, ovulation, and cd
Thanks for the response Susan,
I am concerned that I might end up asserting something that I cannot
demonstrate to be true so I hope folks will bear with me when I say, once
again that our results are preliminary and will require a lot of
loop-hole filling before being accepted for publication. However, I am
aware that another "urinary-peptide man" is turning up results not
dissimilar to our own.
I was very interested that such problems, with the monthly migraines,
should occur in your family given the presence of autism etc.
The discerning reader may have noted that I did not mention at what time
of the month we found this (presumed) increased leakiness to be most common
(and I
have to say that it is not always precisely the same). It would be
interesting to note at what time of the cycle these problems are most
apparent. Columbo is being repeated on the TV and this is a ploy that he
has often used in such situations.
Forgive me for not getting involved in the amino-acid profiles; I would
prefer to leave that to others but I am glad that you have highlighted
the involvement of B6 in these reactions as they tend to get ignored. The
trouble with B6 is that it is a co-enzyme for so many reactions in the
bdy and if it is effective in ameliorating the symptoms of autism there
must be at least half a dozen explanations as to why.
I do appreciate the personal reports. After all, they are clinical facts
whereas much of what is written is interpretation of these facts or
hypotheses based around them.
Paul S.
=========================================================================
Date: Tue, 10 Oct 1995 22:24:56 -0700
From: scott adams (sadams@HOOKED.NET)
Subject: milk
I just received the following from Dr. Reichelt in response to my e-mail
regarding the possibility of gluten in cow's milk due to their diet:
)Hi,
)I do not know and I think this has not been adequately studied. Feeding
)cows large amounts of grain is a fairly modern development and would if
)they behave like humans, cause increased frequency of autism undoubtedly.
)The dairy industry is causing trouble for such investigations. Sorry
KL Reichelt
)K. Reichelt
)Pediatric Research Institute
)N-0027 Oslo, Norway
)Tel: +47 22 86 90 45
)Fax: +47 22 86 91 17
)E-mail: K.L.Reichelt@rh.uio.no
If anyone knows where I can obtain more information on the subject, please
post the information, or send it to me directly.
Thanks,
Scott Adams - San Francisco, USA
Celiac Website:
http://www.hooked.net/users/sadams/
=========================================================================
Date: Sat, 14 Oct 1995 07:27:26 -0500
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: CEliac disease and seizures
Not medical advice
There is now a reported association in the medical literature between
celiac disease and seizure disorder. In children there may be severe
epilepsy with the initial focus being in the occipital or temporal lobes(
the rear end of the brain). It may respond very well to typical seizure
drugs. There may also be a build of calcium in that part of the brain on
CAT scan. There is not much reported on adults with seizure disorder
other than the fact that it is more common for celiacs to have a seizure
disoder than the general population. I certainly have seen patients
whose seizure disorder is worse when they have not been gluten free.
However this may be due to better absorption of the antiepileptic drugs
as an alternative explanation rahter than a direct toxic effect of gluten
or a nutritional deficit.
Joe Murray
PS there was an international symposium in April in San Marino devoted to
the epilepsy in celiac disease.
=========================================================================
Date: Thu, 19 Oct 1995 14:09:13 PDT
From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV)
Subject: oats
Comment from Don Kasarda, Albany, CA, on oats safety.
I have not seen the NEJM article from the Finnish group although I had heard
second hand about a meeting presentation of the work. I have no reason to
doubt the results. I am coauthor of a paper from an independent study
carried out by the laboratory of Dr. Conleth Feighery, Trinity College,
Dublin, Ireland, and this study (paper submitted) also supports the lack of
toxicity for a pure oats sample.
I will remind people that it is easy for oats to be contaminated with wheat
both in the field and in processing.
I have no reason to think that oats must be limited to small amounts, but,
of course, it isn't good to focus one's diet too much on a single food, so
moderation of the normal sort is probably good.
There are bound to be some people who are sensitive to oats, possibly
through an allergic reaction to one component or another (just as there are
people allergic to rice), but this sensitivity, on the basis of current
results, seems unlikely to be celiac disease in its strict sense.
The term gluten in celiac disease is not used in a proper sense (in that
sense it is present only in wheat), but rather as a shorthand term for
peptides derived from prolamins (proteins) that include the harmful amino
acid sequences found in wheat. These peptides set off (in an unknown way) a
series of reactions that ultimately may lead to flattening of the mucosa,
malabsorption, and possibly other effects as well. Wheat, rye, and barley
have prolamins that contain the toxic sequence(s). The finding that oats is
(are?) not toxic indicates that the key sequences are not found in the
avenins, the prolamins of oats. Comparison of the amino acid sequences of
avenins and gliadins yields clues to possibly important differences and I am
pursuing the significance of these differences.
=========================================================================
Date: Sat, 21 Oct 1995 20:46:07 -0500
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: Gastrocrom
Not medical advice
gastrocrom is an oral form of cromalyn sodium, which better known as an
asthma mediaction. It prevents one of the common allergy cells ( mast
cells) from releasing its packet of nasty chemicals in response to some
allergen. Once an allergic response has happened it doesnot stop it.
The oral form Gastrocrom is used by some to reduce food allergies. There
is very little research to prove that it is effective in this way. It
certainly has no role in treating celiac disease as the mechanism for the
damage of celiac disease is not blocked by this agent.
Joe Murray
=========================================================================
Date: Sat, 21 Oct 1995 21:04:12 -0500
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: Endomysial and gliadin blood tests
Not medical advice
There are two classes of antibodies seen in untreated celiac disease.
Antibodies directed against a fragment of gluten called gliadin
and antibodies directed against some tissue in the body itself,
endomysial(the covering of muscle), reticulin ( the framework for kidney
and liver) and there are some other.
The actual tests are done using blood from the patient. LT 5ccs of serum
is usually plenty. The blood cells are removed.
The gliadin tests is usually an automated machine read test. While this
means there is little room for interpretor error, there are no standardised
tests, normal ranges, or even methods in use in the US.
The endomysial tests are more dependent on the experience and ability of
a pathologist in looking at a pattern of staining produced by the
patients serum on a slice of monkey esophagus. While this test is done
in similar way in most labs there are differences in how these are
interpreted.
How good are these tests?
If all of the tests are positive then they are pretty accurate, 90%
right. However there are several reasons and circumstances when they are
not so accurate. IGA and IGG are two diffrent varieties of antibodies we
have in our immune systems. The IGA gliadin and IGA endomysial tests are
the most accurate and also become negative relatively quickly after
stopping gluten ( 3-6 months). The IGG is not as specific( it can
positive in non celiacs). However it is important to do both, as about 4%
of celiacs have no IgA at all.
The biopsy is still considered the goal standard to confirm the
diagnosis.
If one is screening for celiac disease it is important to make sure that
the patient have been on a gluten containing diet.
The tests may also be useful in following up a known celiac to help
confirm that the diet is free of large amounts of gluten.
Also blood tests results may not be directly comparable from one lab to
the next.
Needless to say the interpretation of mixed results some positive and
some negative is complicated. also the interpretation and use of these
tests in infants may be different.
Not medical advice
Joe Murray
=========================================================================
Date: Mon, 23 Oct 1995 10:08:10 -0500
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: CELIAC Disease and diabetes
The link between diabetes mellitus and Celiac disease does not relate to
gluten or malabsorption causing pancreas damage. It is due to the
similar tissue types that occur in both Type 1 diabetes and celiac
disease. type one diabetes comes on in young people and is associated
with lack of insulin( also called juvenile onset). These two diseases
have tissue types that can be similar, and reports suggest up to 10% of
type one diabetics of causcasian extraction may have celiac disease. In
iowa it is about 6 %. Usually the diabetes is diagnosed first. The
symptoms of type one diabetes are usually obvious, with weight loss,
passing a lot of urine , increased appatite, blurring of vision. it is
the celiac disease that can remain hidden.
Not medical advice
Joe murray
=========================================================================
Date: Wed, 25 Oct 1995 12:05:04 -0500
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: CELIAC Disease and lupus, etc
There very little info on the statistics for the coexistence of celiac
disease and other autoimmune disease. They certainly can co-exist,
however good studies are lacking. The association with lymphoma is better
described. However the risk in non compliant biopsy proven celiacs is
still quite low 5% lifetime risk. it is lower still in compliant
patients. Are there individuals who have a higher risk of getting it,
other than the compliance issue, age may be another factor. The older a
patient is the greater the risk. As more atypical patients are diagnosed
with CD the % who get lymphoma will likely fall.
not medical advice
Joe Murray
=========================================================================
Date: Thu, 26 Oct 1995 06:49:46 EDT
From: Bill Elkus (Bill_Elkus@JEFCO.com)
Subject: gluten in mother's milk
A little while ago, there was discussion of whether a mother eating gluten
could transfer it to her nursing baby. Here is some additional input, reposted
with Dr. Horvath's permission
Bill Elkus
To: Bill_Elkus @ lanet1.jefco.com (Bill Elkus) @ MHS
From: khorvath @ umabnet.ab.umd.edu (Karoly Horvath)
Date: 09/29/95 08:06:05 AM
Subject: Re: dietary proteins in mothers milk
Proteins ingested by mother can appear in the breast milk. There
is well known disease in breast fed babies called eosinophilic colitis,
which causes eosinophilic infiltration in the large intestine of the
babies and clinically presents as rectal bleeding. The therapy is very
simple: the mother stops ingesting cow milk and cow milk products and the
babies do not have bleeding and they are completely well.
Based on this clinical syndrome, I do not have any doubt that
gluten peptides can be in the circulation. I recall a study (in some
dermatological journal) detecting circulating gluten in the blood of
patients with DH.
Karoly Horvath
Baltimore
=========================================================================
Date: Fri, 27 Oct 1995 08:05:09 -0400
From: Karoly Horvath (khorvath@UMABNET.AB.UMD.EDU)
Subject: Re: Autoimmune diseases and CD
There is an old and excellent publication about "Celiac disease and
immunological disorders" (Cooper BT, Holmes GKT, Cooke WT. Britsih
Medical Journal, 1978:1:537-539.)
Out of 314 patients with CD, 63 had associated disorders of known or
suspected immunological cause. 52 autoimmune diseases were found in 45
patients. An important point: most of these diseases developed when the
patients were on NORMAL DIET.
Karoly Horvath, M.D., Ph.D.
Baltimore
=========================================================================
Date: Mon, 6 Nov 1995 13:43:08 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: swelling arm
Not medical advice
after a mastectomy a rare complication is lymphedema of the arm on the
same side. this a blockage of the lymph channels in the arm pit. It may
be helpful to maintain great care in protecting that arm from injuries,
cuts etc. Elevation might help. aproblem like should be discussed with
the doctor/ surgeon who did the operation.
Joe Murray
=========================================================================
Date: Fri, 10 Nov 1995 23:38:49 +0000
From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK)
Subject: Re: grain alcohol
Being a keen beer drinker myself I realise that there may be those on
this list for whom such delights are impossible and I wondered if there
was something that could be done about this sad situation.
On our campus there exists a "Brew Centre" where people can train in this
subject. Apparently many of our "graduates" have gone on to found their
own micro-breweries in various parts of the world. It occurs to me that
it should be possible to make a beer which can be guaranteed to be gluten
free (or at least free from wheat, barley or oat prolamins). I have
discussed it with the top man and he is quite keen to try out a few ideas.
Clearly this would not be a great money spinner as the market is
comparatively small but I just wondered if any of the folk who do have a
problem with beer would be interested in such a project or think that it
is worthwhile. If no-one is interested we will not bother.
If anyone would be interested in such a product perhaps you could let me
know. If there is an interest it would encourage further efforts in this
direction.
Cheers, Paul Shattock
=========================================================================
Date: Wed, 15 Nov 1995 13:17:42 PST
From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV)
Subject: sorghum/millet beer
comment from Don Kasarda, Albany, CA, on beer question.
There is no adequate standard analytical method (that I know of) to test for
gluten peptides in beer.
Of possible interest, however, is a box included within an article that was
part of an section about Africa in New Scientist (October 7 issue, I think),
a British publication. Because some of their staffers had indicated that
African beers made from sorghum and millet, which they had encountered
during the visit to Africa to prepare the section, were quite tasty, the
magazine editors sampled some African beers that are available in Britain as
a side comment to the article. The claim was that these beers are made with
millet or sorghum and without barley malt, but rather fermented with a
bacterial enzyme. Consequently, if this is true, the beers should be free
of any barley, wheat or rye components. I doubt that these beers would
taste like a barley-based beer, but they did say that some of the beers
consumed in Africa were quite good--the few brands that could be bought in
Britain were maybe less good.
=========================================================================
Date: Thu, 16 Nov 1995 00:50:44 +0000
From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK)
Subject: Gluten Free Beer
There has been quite an encouraging response to my previous posting about
the desirability of such a product. Don Kasarda has described precisely
what we had in mind for this product. We have been checking out the
possibilities for a "beer" based on sorghum or on millet. My
understanding is that these grains would be low in the amylase enzymes
which are required to convert the starch into fermentable sugars.
Therefore enzymes from some other source must be added and these are
available from bacterial sources.
Personally I have not knowingly tasted the African products which are
made in this way but I am told they are perfectly acceptable. I will try
to get hold of some and perform some organoleptic tests.
I must also agree with Don that it is very difficult to test for gluten
content in beer and so it would be necessary to be able to guarantee that
the starting materials are all totally clean. However we will try to
think of something which will work.
Katriina Mdkinen has reported that a number of very well known European
brands of beer are claimed to be "gluten-free" by the Swedish Coeliac
Association. I am only guessing here but I would imagine that this status
is obtained by filtration of the proteins.
It has been reported that it is not necessary to have the whole molecule
of gluten to get the classic coeliac response so presumably soluble
peptide elements (from breakdown of the protein) could still evoke this
response in a technically "gluten-free" beer.
Am I correct on that one Don (Kasarda)?
I have been censured for asking personal questions on this list but I
thought the question and the hoped for response might be of general interest.
Good Health, Paul Shattock.
=========================================================================
Date: Wed, 15 Nov 1995 18:43:55 PST
From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV)
Subject: beer proteins/peptides
Paul Shattock asked:
)It has been reported that it is not necessary to have the whole molecule
)of gluten to get the classic coeliac response so presumably soluble
)peptide elements (from breakdown of the protein) could still evoke this
)response in a technically "gluten-free" beer.
)Am I correct on that one Don (Kasarda)?
Yes, Paul is correct. A typical gliadin (or hordein) protein will contain
approximately 300 various amino acids of 20 types linked end-to-end in a
specific sequence into a necklace-like chain. During the enzyme action in
the process of beer making, however, the chain is broken down into smaller
pieces. Testing for the intact protein will probably show nothing because
there are no (or only very small amounts of) intact proteins of the gliadin
or hordein types remaining and there are no good standardized tests for the
smallest peptides that might be harmful to celiac patients. There is pretty
good evidence for a 19 amino acid residue peptide having toxicity (Ciclitira
and coworkers, Lancet). This small size peptide would require very special
research to be carried out in order to enable its identification in beer.
It would not be filtered out from the beer. Electrophoresis of the proteins
of beer shows no intact hordeins. This does not mean that the harmful
peptides are not present. They may or may not be present. I don't think
the subject has not been researched adequately.
Don Kasarda, Albany, CA
=========================================================================
Date: Thu, 16 Nov 1995 09:08:26 EDT
Name: Bill Elkus (Bill_Elkus@JEFCO.com)
Subject: Re: Gluten in NonFood Products
Recently, there was a post which asked about reactions to gluten-containing
products in non-food items, like shampoo or skin cream. The listowners asked
for comments from the CEL-PRO subscribers, who are clinicians and/or
researchers in the celiac field, and received these two:
~~~~~~~~~~~~~~~~~1~~~~~~~~~~~~~~~~~~~
While most celiacs are unlikely to have a reaction to topical gluten
there are some individuals who claim to get a reaction to these non-food
substances. For a gut reaction it would seem that it is necessary for the
substance to get to the gut lumen. I am not aware of any studies on the
penetrance of topical substances to gut lumen.
...
I tell celiac patients who ask, that if there is an easy alternative
shampoo/ cosmetic/etc. use the non gluten containing substance. I do not
routinely counsel patients about avoiding gluten in these substances.
I have met some patients who have an anaphylactoid response to gluten and
these patients I tell to avoid gluten in all forms.
~~~~~~~~~~~~~~2~~~~~~~~~~~~~~~~~~~
There are countless coeliacs who several times a week have dermal contact with
gluten. These are coeliacs who bake for the rest of the family with regular
flour. In my experience ( an adult coeliac clinic of well over 500 patients)
none of the many coeliacs who do home baking for the rest of their families
with gluten containing flour develop symptoms, either in the GI tract or the
skin. I not aware of baking being associated with poor response to a gluten
free diet. Topical gluten in the upper airways causes symptoms of allergic
rhinitis in an occasional patients. I have always assumed this to be due to
coexistent atopy.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
These are the views of just two celiac professionals, and not the result of
tens of scientific studies. In the early days of this CELIAC list, there were
an number of posts claiming serious reactions, so not everyone will agree with
these doctors. As with so many other issues, each Celiac must make their own
decision. Having read these, I will still try to avoid obvious
gluten-containing non-food items for my Celiac son, but if none are available,
I will probably go ahead and use the gluten product.
Bill Elkus
Los Angeles
=========================================================================
Date: Sat, 18 Nov 1995 13:48:31 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: Blood test normal ranges
Unfortunately because these tests are not standardised, there is no one
set of normal ranges. Each laboratory in the USA has to generate their
own normal range. The scales are not comparable, So follow up tst
results done at another lab may not be accurately compared with teh
results obtained at the first lab.. anothe problem is that there is
tremendous consolidation in the laboroatory world with bidding processes
making it possible that your provider may end up sending later specimens
to different labs. It does not mean that any one lab is better than
another, just different.
Joe Murray
Not Medical Advice
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Date: Sat, 18 Nov 1995 13:53:45 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: CELIAC disease and Fosamax
Fosamax, Alendronate, is a newly available drug used to treat
postmenopausal women with osteoporosis. It does so by blocking
resorption of bone. It may be important to make sure that a celiac
individual does not have osteomalacia, or hyperparathyroidism before
starting someone on the drug, as it might make it worse. the issue of
whether the drug is gluten free also needs to be established.
This only one issue to be considered The potential interaction with
hormone replacement needs to be addressed also.
Not Medical advice
Joe Murray
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Date: Sun, 19 Nov 1995 17:07:36 PST
From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV)
Subject: gluten in normal diet
Kemp Randolph asked how much gluten is in a normal diet and how much has
been shown to have an effect on celiac patients?
I estimate very roughly that a normal diet would include about 10-40 g of
gluten per day. I estmate (also roughly) that normal wheat bread contains
about 0.04 grams of gluten per gram of bread.
To the best of my knowledge, the smallest amount that has been tested with
patients and shown (biopsies taken) to have a definite effect is 0.1 gram
per day (Catassi et al.). The biopsies demonstrated an increase in
intraepithelial lymphocyte count, one of the earliest signs of an effect.
The challenge was on 10 patients (children) for 28 days each. Four of the
patients showed an increase in IgA antigliadin antibodies. The intestinal
permeability test remained normal.
Washed wheat starch contains somewhere between 0.001 grams and 0.1 grams of
gluten protein per 100 grams of starch. The true amount is, in my opinion,
not known because of problems with the analytical methods available for
defining gluten bound to starch. Also, the method of preparation affects
the amount of gluten present on the starch. Better washed wheat starches
probably approach the lower limit and poorly washed starches may approach
the upper limit.
This is not medical advice in any legal sense. It is off the top of my
head-- hence, let the reader beware. Perhaps others on the list will check
my numbers and comment or correct.
Don Kasarda, Albany, CA
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Date: Sat, 4 Nov 1995 09:45:41 EDT
From: Bill Elkus (Bill_Elkus@JEFCO.com)
Subject: CEL-PRO on Oats
As promised, the following are comments from professionals on the CEL-
PRO list about oats. Our own __personal__ decision from reading the
NEJM article and the CEL-PRO discussion is to not yet add oats. Here
are the factors which concern us:
a) Oats seem to have a particularly significant cross-contamination
problem with wheat. The oats research project obtained specially pure
oats which are not readily available to us, the regular celiacs of the
world.
b) The NEJM study had patients with only small amounts of oats eaten
per day, and only for six months. It could be that larger amounts
and/or longer periods of time will show significant damage.
c) Only intestinal damage was checked. Damage can also occur in other
systems of the body, and we all know that our personal feelings are not
valid indications of whether a food is causing celiac-related damage.
On the other hand, newly diagnosed celiacs with flat jejunal lesion
showed recovery of the mucosal architecture whether or not oats was
included in the gluten-free diet. We all certainly hope that future
research will validate and extend the NEJM oats study.
The listowners of CELIAC take no 'official' position on this issue --
our job is to make the information available to you so that you can
make an informed decision. So here is their discussion, with minor
editing and the names removed at their request, so that each
of you can judge for yourself ....
The Listowners
-----Edited CEL-PRO discussion follows. ----
***Disclaimer - this is NOT medical advise, it is a general
discussion of the oats issue. See your own doctor for
application to your particular situation ***
~~~~~~~~~~~~~~~~~1~~~~~~~~~~~~~~~~~
I will start off the oats discussion by commenting that this is probably
the single most comprehensive study of the effects of a grain on
celiacs. The earlier evidence for oats as a deleterious agent in
celiac disease was based a very small # of patients or case studies.
reading the report in the NEJM this week would suggest that oats are
safe for most uncomplicated celiacs. There are however some
reservations about the study. Severe celiac disease was an exclusion,
there were some drop outs in both the oats and the control groups and
patients with complications were excluded. If the findings are
generalisable to the whole population of celiacs then it would certainly
make life a lot easier.
I have a concern about whether oat flour is reliably free of
contamination with barley/ wheat. Also what would happen if we challenged
a celiac with high doses of oat flour, greater than the 50g used in
this study. Also would oat flour protein produce any of the subtle
changes seen in the rectum with enema challenge.
~~~~~~~~~~~~~~~~~2~~~~~~~~~~~~~~~~~
Here in Finland [where the NEJM study was done] there are mixed
feelings about oats. Our colleagues from Kuopio have done a very good
study, and in fact the study is going on. Five year follow-up results
will tell us more, the authors are this autumn rebiopsing the coeliacs
eating oats. Within our Celiac Disease Study Group we have discussed
this, and we are going to discuss the item within the
expert team of the Finnish Coeliac Society. At this point I want to say
some words regarding children.
Today we are not going to allow coeliac children to eat oats. We are
first going to perform a study, our ethical committee has accepted our
protocol.We are also going to look at minor jejunal changes in the
*normal* mucosa revealed by immunohistochemistry. Again, the oats
producer will provide us the oats for the study (same deep-freezed
tested batch through the whole study). If no harm is seen, oats will be
accepted also for children and this is important in our country, we by
tradition consume oats. Then another story is whether all oat flour
products at our market are clean. This is a real practical problem and
we will study this. As you probably know, in Ireland the oats was
contaminated, Dr. Conleth Feighery and colleagues used in their study
oats from a German producer, tested not to be wheat contaminated (from
the fields and mills). The Irish study pointed at the same direction as
the Finnish one (9 adult coeliacs challenged with 50 g of
oats for 3 months), oats was tolerated. The authors also looked for
immunological activation in the mucosa, no changes were seen (paper
presented at the 8th International Congress of Mucosal Immunology, San
Diego, July 1995, abstract Srinivasan et al. Oats cereal is not
immunogenic in coeliac disease. Clin Immunol Immunopathol 1995;76
(part 2):S72).
~~~~~~~~~~~~~~~~~3~~~~~~~~~~~~~~~~~
I would agree with [#2 above] about caution. I would like to see the
longer follow up data before telling my patients they can eat gluten.
If oats have a weak deleterious effect it may take a lot longer than
wheat to produce changes that are apparent on microscopy.
Could the use of the gluten reduced starch have had a confounding
effect on the study. The symptom scores seemed not to be very
discriminatory in that the control group in remission had a similar
score to the newly diagnosed celiacs.
[editors note - the Finnish study was of celiacs who consumed low-
gluten wheat starch. As we know, this is an issue of considerable
controversy. Many European countries consider this perfectly safe,
but in the US most celiac groups do not. It the US groups are correct,
then celiacs consuming wheat starch and oats might have abnormal
results compared with celiacs consuming no wheat starch and no oats,
but the Finnish study would not have discovered that since it compared
the oats group to control group which also consumed wheat starch]
The low amount of avedin 1.2g of avedin/ 60 grams of oats is not very
much by comparison and may take a lot longer to generate damage.
I am uncomfortable with the conclusions of the authors that it would
help compliance to give patients the oat option with the knowledge
that there is only a little protein in it. Are they likely to be any
more compliant or will they just add oats to their unrestricted diet.
If I am going to recommend to patients that they can eat moderate
amounts of oats it will be to patients who are most likely to be
compliant with the dietary restrictions on wheat, barley and rye, and
who wil come back for follow up. These are probably not the patients
likey to benefit most from easing restrictions. Five year follow up
data would be more reassuring. Also the comments about purity of the
oats is important to keep in mind. It would have been interesting to
look at the serological markers in these patients.
~~~~~~~~~~~~~~~~~4~~~~~~~~~~~~~~~~~
I just got back from a meeting in Europe on the epidemiology of Celiac
Disease. There was a big discussion within the scientific community
present at the meeting about the NEJM paper on oat tollerance in CD. We
all had a mixed feeling about the conclusions of the study and my
position is enterely in line with [the authors of #1, #2 and #3]
comments.
~~~~~~~~~~~~~~~~~5~~~~~~~~~~~~~~~~~
The results of Kuopio group published in NEJM are probably changing
our dietary recommendations. [The author of #1] has recently
discussed the situation in children. The study has been carried out in adults,
and in adults the demand to change dietary recommendations is strong,
as we have noticed during the last days.
I think adult celiac patients can switch to oats containing diet under
strict follow-up. The amount of oats tolerated, the long-term effect
of oats, and the importance of gliadin contamination has to be
investigated, however.
I recommend to my CD patients that they should undergo gastroscopic
examination 1-2 years after starting oats-containing diet. Some
antecedent information of the mucosal architecture should be available
as well. If not, a duodenal biopsy should be taken even before
starting of oats. By this way we also can observe possible
minorinflammatory changes such as an increase in IEL or alpha-beta
T-cell receptor bearing lymphocytes.
If this arrangement sounds too laborious, at least a strict follow-up
by physicians and dieticians are essential. The follow-up comprises
general well-being, signs of malabsorption and EmA or AGA analysis.
~~~~~~~~~~~~~~~~~6~~~~~~~~~~~~~~~~~
I would agree with [author of #5] that it may be reasonable to
introduce to certain well controlled and already compliant patients.
50 grams is quite a small amount and 6 months is not long. I agree
that in those patients that follow up biopsy possibly including a
more senstive markers for reaction that simple architecture is needed.
However I fear that limiting intake to 50 grams, the issue of
contamination, compliance with follow up will be difficult in our
setting due to cost and other factors. Many patients with celiac
disease have little or no follow up.
Is any one aware of the % of patients who don't follow up? This is a
difficult if not impossible question in the US due to people moving,
health insurance mandated changes in doctor etc.
~~~~~~~~~~~~~~~~~end~~~~~~~~~~~~~~~~~
=========================================================================
Date: Thu, 23 Nov 1995 11:43:27 +0000
From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK)
Subject: Gluten Free and Cost Free (UK)
In the UK, in spite of the best efforts of our government, we retain the
vestiges of our National Health Service. Under this system medications
are provided free of charge or at a uniform flat charge. Gluten Free
breads, biscuits, flour etc have, for many years, been available to
people diagnosed with Coeliac Disease.
Today we had, as far as I am aware, our first success for a person with
autism. The young boy's physician was sufficiently impressed by the
changes he had seen to prescribe gluten-free products on the NHS.
(totally free of charge for children.) If the bureaucrats who monitor
such prescriptions are not satisfied they can challenge the decision and
if they are successful the physician must pay out of his own pocket.
Of course, the physician could challenge the decision and the veracity of
the opioid excess theories of autism and the effectivenes of
gluten/casein free diets would be decided in a court of law. This should
be entertaining - perhaps the government will be forced to invest in a
decent scientific study.
Perhaps we can then celebrate Thanksgiving day over here.
Paul Shattock
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Date: Sun, 26 Nov 1995 00:09:06 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: endoscopy and biopsies
There was w recent description of a biopsy preformed on an adult. The
practise of and the experience of having an endoscopy differ
significantly from individual to individual and from country to country.
The person from the Netherlands described a endoscopy done without
sedation. The use of sedation can dramatically alter the perception and
recollection of the proceedure. This of course can alter the way people
feel about having it done. Other factors such as supportive staff, size
of the scope, local anaesthesia, preparedness of the patient, anxiety and
health status all play a part in the experience.
The use of sedation for routine endoscopy varies from country to country
and from practise to practise. In the US currently most endoscopy would
be done with sedation. Modern sedating drugs aim to induce relaxation,
and often amnesia for the event. The patietns are conscious in the sense
that they can follow verbal requests, breath on their own and protect
their airway.
If you are to have a biopsy talk to the endoscopist methods to make it as
little uncomfortable as possible.
Not Medical Advice
Joe Murray
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Date: Sun, 26 Nov 1995 00:37:13 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: re excessive thirst in a 8 yr old celiac
The single most important disease that causes escessive thirst, tiredness
and increased urination is diabetes. These symptoms need urgent medical
attention without any delay whatsoever.
There is an association between Diabetes mellitus( juvenile type ) and
celiac disease due to similar genetics.
Not medical advice
Joe Murray
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Date: Wed, 29 Nov 1995 10:55:04 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: CELIAC Disease and tropical sprue
Tropical sprue is a condition that can produce changes in the intestine
that are similar to celiac disease. It happens to people who have been
in highewr risk places , southeast asia and south america. It is
treated with antibiotics and folic acid with goood and prompt resolution
in most cases. If there is a question of tropical sprue then usually it
more sense to treat for that first before trying a glutenn free diet. It
is said that the damage form tropical sprue does not get as severe as
that of celiac disease, but it may be very hard to distinguish.
Parasitic infestations also need to be considered in people returning
from underdeveloped areas.
Not medical advice
Joe Murray
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Date: Thu, 30 Nov 1995 11:37:02 PST
From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV)
Subject: malt in cereals
Beverly Sosulski wrote:
)Kelloggs products contain more than 0.02g/kg of Gluten and
)are toxic to Coeliacs.
I would be interested in learning how the amount of 0.02 g/kg was arrived
at. I would also like to point out that, to the best of my knowledge, such
an extremely small amount of gluten has never been demonstrated in any
scientific way to be harmful to celiac patients. To put this quantity in
other ways, it is 0.002% and a normal serving of cereal, say 50 g, would
have only 1 mg of gluten in it at the 0.02 g/kg level.
I am not saying that this low level isn't harmful, particularly for someone
in a debilitated state. The question has never been addressed adequately in
a scientific way. I say, on the other hand, there is a possibility (my
educated guess based on what I think is a reasonably good knowledge of what
testing has been done) that for the average celiac, such a small amount is
not harmful. For example, in the recently published study on oats (Finnish
study), the patients were fed a mixture of oats and wheat starch.
Accordingly, they were probably ingesting more than 0.02 g/kg of gluten
(from the wheat starch, which apparently contained 0.74 mg of gluten per
gram of starch). Recovering celiac patients continued to recover
(Janatuinin et al. NEJM 1995: "We found that the use of oats by patients
with celiac disease as part of a gluten-free diet had no unfavorable effects
on adult patients in remission and did not prevent symptomatic and mucosal
healing in patients with newly diagnosed disease.")
Not medical advice.
Don Kasarda, Albany, California
=========================================================================
Date: Fri, 1 Dec 1995 12:40:12 PST
From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV)
Subject: 0.02 grams per kilogram
I thank Beverly Sokulsky for her comments and explanations.
I do have a number of reservations about various aspects of what Mr. Howarth
has said. I don't have time to go into great detail, but some of my past
postings are pertinent. I shall just make a few comments.
1. I don't think there is any analytical method that meaningfully and
accurately measures harmful proteins or peptides (they are not always the
same) on starch or in other foods at the 0.02 gram per kilogram level. So
it seems to me that to base a regulation on that number is rather arbitrary.
2. I don't think there is any evidence that gluten at the 0.02 gram per
kilogram level causes increased incidence of cancer in celiac patients and
some evidence to the contrary.
As always, I emphasize that we do not have as much scientific information as
we would like, and people may choose validly not to risk ingesting any food
that might in any way be contaminated with gluten (which carried to an
obviously absurd extreme would cause one to give up food). I am, however,
frequently disturbed by the way arbitrary decisions and pronouncements by
various people become accepted by the celiac community as based on valid
scientific results. I ocasionally try to point out when statements made are
invalid or go beyond what may reasonably be inferred from the scientific
work that has been done so far. Of course, new information is being
developed continually--as in the case of oats. What was considered
scientific fact some years ago must give way to new (usually better)
experimental evidence. I assume that almost everyone on this list would
prefer to start with valid information from which to proceed to sometimes
necessarily arbitrary decisions about his or her diet and behavior.
Don Kasarda, Albany, California
=========================================================================
01-27-96 11:44pm
Date: Tue, 12 Dec 1995 10:20:09 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: oats and celiac children
I have noticed that some people refer to using oats in celiac children as
though that were generally acceptable. I do not beleive that to be so.
There have been some studies that have shown oats to damaging to children
with celiac disease. The preliminary report in the new england journal
of medicine I do not interpret as a license to eat oats for all or even
many celiacs. The study looked at a small amout of specially prepared
oats in adults without severe celiac disease. No conclusions can be drwn
about children from this study.
I am not recommending to my patients that they can eat oats. There needs
to be a lot more infomration available before oats can be used freely if
at all by celiacs. If a patient want s to use oats I suggest that follow
up biopsies would be prudent. No body knows if the antibody tests
availalbe will be sufficient for the purpose.
Joe Murray
Not medical advice
=========================================================================
Date: Tue, 12 Dec 1995 10:38:08 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: CELIAC Disease and lab charges
My suggestion is to find out from the billing service for the lab what
the codes actually mean and then hassle the insurance company. Dont
accept the initial response and keep going higher in the insurnace
company. Kepp records of who you speakj to and what they told you. put as
much as possible in writing. $20 dollars is rediculous. 100 to 200 is
usual. Good luck in your battle with the insurance company.
joe murray
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Date: Tue, 12 Dec 1995 16:15:38 PST
From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV)
Subject: Re: Query: sprouted wheat
Reply from Don Kasarda, Albany, California
Most sprouted wheat still has gluten or gluten peptides remaining. Although
the sprouting begins enzymatic action that starts to break down the gluten
(a storage protein for the plant) into peptides and even amino acids.
Generally this is not a complete process for sprouts used in foods so some
active peptides (active in celiac disease) remain. I don't know anything
about Bioguard specifically, but I would be cautious about it until the
company can say on what basis they are claiming "gluten-free." For example,
how have they tested this?
)I just purchased an antioxidant from a health-food store, called "BIOGUARD".
)The label reads: "Bioguard is composed entirely of hydroponically grown
)wheat sprouts. Hypoallergenically free of wheat gluten and yeast."
)
)J. F. Levin, Lit/Lang, UCR. 909 787 5007
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Date: Wed, 13 Dec 1995 15:33:07 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: CELIAC Disease and sjogren's disease
There is an increased assocaition between the two disease's, probably
because both are autoimmune diseases. One scandanavian study ( small )
suggest that 10% of sjogren's patients also had celiac disease.
Joe Murray
Not Medical advice
=========================================================================
Date: Mon, 18 Dec 1995 12:10:58 +0000
From: "P.SHATTOCK" (hs0psh@ORAC.SUNDERLAND.AC.UK)
Subject: Re: urinary tract symptoms
On Thu, 14 Dec 1995, ANDREW E. STEVENSON wrote:
) I'm interested in the recent discussion on urinary tract symptoms and their
) possible relation to gluten. One of the unexpected changes in our
four-year-old
) daughter once she went gluten-free was in her bathroom habits. Before her
) diagnosis, she always insisted that she never had to urinate, and she usually
) went only twice a day. She had "accidents" a few times a week. Once she began
) the diet, we were amazed that she began urinating regularly every few hours,
as
) we would have expected a child to do. Now, she rarely has an accident--it
seems
) to happen only when she accidentally ingests gluten. It's as though something
) about her reaction to gluten makes her unable to monitor her bladder
sensations.
)
(much interesting and supportive data snipped)
I am sorry to have been so slow in stepping into this discussion but
"better late than never".
I appreciate that Coeliac Disease and Autism are different and that it is
by no means universally accepted that gluten is of relevance in the
latter. Nevertheless, there are similarities and, I suspect, certain
areas where there exist commonalities in terms of symptoms and causation.
Our studies have centred around autism and so any comparisons which you
wish to make with Coeliac Disease must, dear reader, be a matter for your
own determination and decision.
In our (unpublished in formal journal) study we found clear evidence of a
general reduction of sensitivity to sounds, taste and proprioception. Our
attempts at visual tests were inadequate but the student concerned did
perform some limited tests on one subject for the perception of pain.
(This last study was difficult to replicate for ethical reasons but the
subject of the study was the student's brother and in such situation
ethical considerations tend to be ignored.) It should be noted that
within this general reduction of sensitivity there were certain exeptions
where comparative hypersensitivity exists (for example the particular
frequency which the door-bell uses or Whitney Houston's top note) and
distress could result.
OK we are extrapolating from these situations but if these senses are
affected it is likely that others will be as well. An example would be the
peculiar sense of balance which is exhibited by people with autism. We
subscribe to the theory that gluten (and casein) derived peptides with
opioid activity are reducing tramsmission in the brain and, thereby
reducing the perception from all the senses. In the case of the "balance"
situation, we would regard the unusual skill as the consequence of the
inhibition of transmission of impulses between the semi-circular canals
of the ear to the interpretive centres of the brain.
Thus, when the source of the opioids is removed, the sensations will get
through and the situation as you describe will result. In the same way,
when the gluten is re-introduced, the opioid peptides would re-appear and
exert their effect. It is interesting that some folk have reported that
upon initiation of such interventions their child apears, temporarily at
least, to urinate much more frequently than before.
I appreciate that I have missed out most of the explanatory information
but my posts have a habit of being overlong anyway. Congratulations on
reaching this far.
Paul Shattock
=========================================================================
Date: Wed, 20 Dec 1995 17:27:18 -0500
From: Kevin Lawson (IMMTEST@AOL.com)
Subject: Re: Blood Test Lab
The serological diagnosis of CD is made by these three tests (IgG and IgA
anti-gliadin, endomysial (EMA) and reticulin (ARA). To obtain meaningful
results, it is essential that the tests be performed on well-standardized
test kits by experienced laboratory personnel. Because of these limitations
the results may vary from laboratory to laboratory. I would advise sending
the results to laboratories that specialize in these tests.
Dr. Vijay Kumar
=========================================================================
Date: Thu, 21 Dec 1995 11:59:55 -0500
From: Kevin Lawson (IMMTEST@AOL.com)
Subject: Re: need advice
Celiac Disease can easily be diagnosed by simple blood tests. These blood
tests, when performed by experienced laboratory personnel are very specific
for CD. If you believe you and your family member have CD and it is
precipated by wheat, I recommend that you have blood samples sent to a
specialized lab. I believe several have been mentioned on this list in
previous postings.
Sincerely,
Vijay Kumar
President IMMCO Diagnostics
=========================================================================
Date: Fri, 22 Dec 1995 15:44:27 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: CELIAC disease and response to GFD
The issue of how long it takes to get a response to the start of a GFD in
a celiac has to be individualised to the patient and the type of symptoms
the patient has. Most patients notice some change in the symptoms within
days or 1-2 weeks of starting the GFD. A few will take longer to start
to respond. "start to respond means less severe symptoms not no
symptoms. The more exacting the gluten free diet is the faster there may
be healing. Lactose intolerance may take longer to get better so
avoiding milk products for a while these people sometimes help. Rare
complications may delay healing.
The most common reason for a deal in remission of symptoms is a diet that
is NOT GF.
Dermatits herpetiformis responds more slowly to the GFD. It may take
months for theitchy attacks to go away, sometimes even longer. Hence
Dapsone and other drugs are used to suppress the symptoms of the itch.
These usually do this quite effectively, but need close monitoring as
they can be associated with some side effects.
Not Medical advice
Joe Murray
=========================================================================
Date: Fri, 22 Dec 1995 16:01:29 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: fat malabsorption, investigation
The finding of increased fecal fat in the stool when measured over a 2-3
day period is almost always a sign of GI problem, not irritable bowel
syndrome. There are literally 100's of causes of steatorrhea( thats the
medical term) some have normal mucosa, some do not. A normal d-Zylose
test implies it is some problem with normal mucosa that is causing fat
malabsorption
but not always. Pancreatic or liver problems can cause fat malabsorption
and have nornal biopsies of the intestine.
This is a very difficult area of diagnosis as there are so many causes.
Not Medical advice
Joe Murray
=========================================================================
Date: Fri, 22 Dec 1995 16:44:41 -0600
From: "J. Murray" (jomurray@BLUE.WEEG.UIOWA.EDU)
Subject: Re: diagnosis, blood tests and biopsies
There have been many recent statements on the list that I feel I should
reply to regarding the diagnosis of Celiac disease.
The 2 most important and accepted criteria for the diagnosis of CD in
adults involves the demonstration of damage in the intestine and a
subsequent response to the elimination of gluten from the diet. This
combination is usually very adequate to identify the disease. There are
caveats to this. One the biopsies should be taken while the people has
been on a normal ( as opposedto gluten reduced or free diet), two
several separate biopsies should be taken from the intestine( during the
same proceedure) 3. these biopsies need to be properly oriented and
stained ( quality varies dramatically), 4. An experienced pathologist
needs to read these biopsies and recognize that there is a suspicion for
celiac disease. 5. The GI has to interpret the results appropriately.
Sometimes the pathologist will describe the abnormal findings but not
mention celiac disease as a possibility. If the GI is aware of the
findings relevance to celiac disease he may not make the connection.
Single biopsies may miss patchy changes.
Blood tests( endomysial, reticulin and gliadin ) have been around for
several years in various forms. These tests when used in research
studies in europe mostly have been shown to coorelate well with classic
celiac disease found on biopsy. These tests are not perfect. There is
much variation between labs. There are people who have celiac disease
whose blood tests are negative but who have it on biopsy. There are some
people wo may have false positive tests( that is have a positive test but
dont have the disease), though this is rare.
Whether blood tsts alone can replace the need for biopsy is still
undecided and broader experience in general usage will determine how well
they stand up to the test of time.
This all goes to illustrate that the diagnosis is not simple and
sometimes it can provide problems for patient and doctor alike.
It also shows that quality in all things makes a big difference.
Sometimes cost containment does not not deliver quality. For those of us
in the USA where HMO's PPO's and other managed care systems are growing
there may be decreased access to quality specialty care due to const
containment measures that limit patients access to special services or
make it very difficult to get good care for conditions that are rare or
ill understood. Celiac disease will need vigorous representatioin at all
levels to get it on the managed care map and keep it there. How can one
influence health care decisions. If you are an individual who has choice
over what kind on health insurance you get ( lucky you if you can afford
it) ask a lot of quastions about how they deal with rare diseases?, do
they allow access to academic centers? what is the referral process for
out of network referrals? etc. If you work for a large corporation, try
to get on the employeee committees that oversee negotiation with health
insurers, etc. They have to pay at least lip service to quality issues.
Not medical advice
heck it's not even good political advice
Joe Murray
=========================================================================
Date: Tue, 26 Dec 1995 09:31:42 -0500
From: Kevin Lawson (IMMTEST@AOL.com)
Subject: Re: need advice
There are three serum tests (EMA, ARA, AGA) for the detection of celiac
disease. According to the criteria set forth by the European Society for
Pediatric Gastroenterology and Nutrition (ESPGAN), two of the three
serological tests must be positive for the diagnosis of CD. EMA has proven to
provide the highest degree of specificity and sensitivity. Results will vary
somewhat according to the expertise of the laboratory and the experience of
the laboratory personnel.
If you have any questions, I would be glad to hear from you.
Vijay Kumar, Ph.D., F.A.C.B.
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