<<Disclaimer: Verify this information before applying it to your situation.>>

Listmates-

This is the summary of responses to my post regarding the paper in
Baltimore. Excerpts from my post, as a reminder:

______________________________

They used 15 or so subjects, lots of oats, and lots and lots of
biopsies. Most of the subjects had no reactions at all, and biopsies
confirmed that the oats were having no effect on their villi.

But most interesting were the two subjects who had reactions -namely
diarhea. Because THE BIOPSIES OF THESE PEOPLE WERE STILL NEGATIVE!

The implications of this study in interpreting the oats summary are
profound. Clearly the individuals who react should avoid oats. However,
the study results mean that the fact that some individuals report
reactions to eating oats is absolutely meaningless to celiacs in
general.

_______________________________

What follows are responses, followed in brackets by my comments as I
invoke the power of the scribe:

____________________________________________

l did my own oats test several years ago when I ate oatmeal for
breakfast every day for several weeks and had no reaction.

My mother could not eat raw fruit or vegetables without having diarrhea.

She had the same problem She did not have CD and could also not take iron
pills.

________________________________________

The reactions of two subjects in a field of 15 seems scant evidence for
drawing such a conclusion.

(Which conclusion? The proposition that "it is possible for someone to
have a reaction to oats which appears to be a gluten reaction but is
really not" requires only one example to be proven true. Here we have
two examples, which hints that it is not an outlying data point.)

_____________________________________

Thanks for sharing this information.  It would be very helpful though
for your fellow listnates if you could provide specific info.  about the
paper either a full cite or at least the author's name and title.
Perhaps this research has been published in a peer reviewed journal by
now and with the name it could be searched.

(Good point. The title is "Two Years Follow Up of Children with Celiac
Disease (CD) Using Oats in Their Diet", by K. Holm, N. Vuolteenaho, M.
Maki, Dept. Pediatrics, Tampere University Hospital and Institute of
Medical Technology, University of Tampere, Tampere, Finland. Those
familiar with the Celiac research world will recognize Dr. Maki as one
of the world's leading Celiac research doctors.)

________________________________________

 I number among those who get sick after eating oats.  For me, it's the
most constipating food on earth.  But, then that's what gluten and dairy
do to me as well.  If I eat any of those three, my entire GI track goes
on strike & refuses to work!  My breakfast of toased wheat bread or
oatmeal & milk use to stay in my stomach until past noon, while I
continued to feel hungry yet stuffed.  Bizarre, huh?

__________________________________________

You are incorrect, sir.

Oats have been clinically demonstrated to show cross-reactivity with
anti-gliadin antibodies. That makes them part of the family of "gluten
grains" without a doubt. By comparison, rice and corn show absolutely no
cross-reactivity.

Celiac researchers have noted *celiac* reactions to oats going all the
way back to Dr.  Dicke's original studies of 1950 and 1953 which
established the link between celiac disease and certain grains.  He did
observe that small amounts of oats given for short periods usually did
not cause celiac symptoms but that larger amounts for a longer time
usually did.  This was before endoscopies were developed, but they were
relatively large controlled studies.  You make it sound as if he was
looking for immediate reactions; not so.  He noted the return of celiac
symptoms over a period of time after larger amounts of oats were
introduced.

His was certainly not the only study to show this, and in any case,
empirical evidence from scientifically conducted studies cannot be
wished away.

The studies you quote have been carefully constructed to achieve the
desired results. Of the two most frequently quoted, one deliberately
excluded "severe celiacs", making it worthless; and the other one was
the only study to have a five-year followup but it involved only 10
subjects. Even the largest study only involved 92 subjects, a
stastistical drop in the bucket.

Dr. Joe Murray of Mayo Clinic, one of our leading celiac clinicians,
stated quite clearly in a speech to our support group that he had
observed celiac reactions to oats in a number of his patients over the
years.

The toxic part of the oat protein is less toxic than the corresponding
part of the wheat protein. It also makes up a smaller part of the total
oat protein than in wheat. So it is definitely less toxic.

And it seems clear that *some* celiacs can eat low doses of oats for an
undetermined amount of time without having a reaction or without a
postive biopsy. Even then, no one can guarantee that no damage is
occurring.  After all, there are some persons with immunofluorescence
skin biopsy-diagnosed DH who have no visible intestinal damage upon
endoscopy. But no one doubts that damage has occurred.

If you wish to risk your health by eating a substance known to cause
damage to celiacs, go right ahead. But you are relying on "cooked"
studies and you are misleading others.

(Murray's position is clear. Yet there are also leading Celiac
researchers who believe oats are not only harmless, but beneficial. The
last sentence of the abstract for this paper reads "Our study shows that
celiac children are able to ingest even high amounts of oats without
harmful effects." The paper under discussion was actually one of two
oats papers presented at the conference. The other concluded "Oats in
the gluten-free diet seem to improve the gluten-free diet nutritionally
and symptomatically, as well as experiences of a tastier and more varied
diet.")

_______________________________________

Thanks for the enlightening information. I think that too many celiacs
interpret every reaction they have to anything as a celiac reaction,
when, in fact, many of us just react to other things besides gluten. My
husband, who is definitely not celiac, gets horrible diarrhea at the
smallest ingestion of oats.

(This, I believe, is the correct conclusion to be drawn from my original
post!)

__________________________________________

Tom, one of the things you neglected to mention was that in that study
they used carefully selected non-contaminated gluten-free oats. And if
they hadn't the study wouldn't be worth much, would it? The problem is
that almost all commercially grown oats are heavily contaminated with
wheat.  They habitually rotate fields between oats and wheat when they
grow it, then when they harvest all those little wheat grains are left
in the field that is used for oats the next year. When the oats sprout,
all those little wheat grains also sprout, so there are wheat plants
growing liberally within the oats, and they look much alike so are
impossible to weed out.

Then when they are harvested, the oat grains are the same size and
appearance as the wheat and again impossible to separate, so the oats
are sold with heavy wheat contamination. Tell me some way to avoid this
and I'd be happy to try oats again. Even some of the brands of oats that
say they are gluten free say that because they haven't added any wheat
to the processing, but I'd like to see that they had chemically tested
their product before I'd want to try it.

Your post as you sent it might encourage a lot of celiac to try oats in
the believe that they will not be harmed. Perhaps they need a caveat to
go with that?

(Is this respondent's post sufficient caveat? But his assertion that all
oats are contaminated, which in a subsequent communication he explained
that he learned from primary sources (namely farmers), begs the question
of "how much". Just as all water has arsenic contamination, all foods
contain gluten contamination. The question in each case is: how much,
and how much is harmful?)

___________________________________

Where did they get the oats? I've had oats give me a sprue reaction even
when I didn't know that the food I was eating had oats in it, AND the
person giving me the food didn't know it had oats in it.

(Regarding source of oats, I don't remember it being mentioned and it's
not in the abstract. But this respondent misses the point. No one is
claiming that any reaction is psychological. The paper proves that the
fact that he has reactions don't make them SPRUE reactions.)

_____________________________________

I was wondering if these oats were harvested just for this study, (clean
oats) or ones taken off the shelf?  I eat Poconos, Cream of Buckwheat
every day and as far as I can tell I am getting along great.  What I
really like is the fact that they are sugar free as I have T-1 diabetes
along with DH and CD.

(See comments above.)

________________________________

Not a big enough study to get me to risk eating oats. Two negative
biopsies fot the two reacting to oats. Many celiacs are missed every
year because of biopsies that didn't look in the right place. How can I
trust these two????  Oats? Not me!

(Keep in mind that these biopsies were done by some of the world's
leading research experts in CD. But this study alone certainly doesn't
prove the proposition that "oats are safe for celiacs". To absolutely
prove that, you'd have to test every celiac on the planet for his entire
lifetime. But it does add to the weight of evidence from other studies.)

_______________________________________________

Well, I'd say it isn't meaningless to us but it's an important
differentiation to sort out. I have been trying to keep straight which
foods are causing which reactions, too, so that i don't panic and
associate symptoms with my gut being attacked and deterioration. But at
the same time, it can't be good for a healing gut to have to deal with
such reactions, so in that sense, I think the reaction is "significant."

(As I said in the original post- clearly, people who react to oats
shouldn't eat them!)

________________________________________________

A study done on only 15 subjects is anything but profound.!!  I am not
disputing your point about oats but that this be a definative study????

(It is definitive in proving the proposition that "reactions to oats may
not be CELIAC reactions, and therefore do not prove that other celiacs
should avoid eating them". This only takes one example to prove, and
this study had two. It is certainly not definitive in proving the
proposition that "oats are safe for celiacs". But again, it adds to the
evidence. At this conference, between the two oat papers, there were a
total of 44 subjects in the studies. There have probably now been
several hundred subjects studied in total over the years. Except for the
early studies noted by one of the respondents above, which looked for
clinical symptoms rather than biopsy results, I don't believe any have
shown that oats cause celiac reactions.)

Tom