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

I polled the "14" people (out of the 61 that responded to my "just
gluten a problem???" question) that were "only" bothered by gluten with
the following question:

"I am wondering how often you accidentally ingest gluten and therefore
are sometimes not sure of the source. And just how much gluten you can
tolerate without symptoms....(eg. .002 grams, butter with some wheat
bread crumbs on it, dates dusted with wheat flour, etc.) I ask this
because so many others, including myself, have to watch out for many
other foods as well and are therefore not sure if it was some unknown
source of gluten or another food that we are trying to avoid."

I find the differences very interesting....tolerance levels, unknowns
etc.

Pat in NH                These were the results: (10 of the 14 replied)
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I dont have accidents I know of more than 2 times a year, and if so,
very tiny hidden amount. For the amount I can ingest, I dont have the
knowledge to measure it. I can ingest tiny amounts and be only more
tired than usual. Not more.
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Since I was diagnosed in 1994 I have had a handful of experiences which
MIGHT have been gluten. Almost every one was when I ate "gluten-free"
items provided by airlines. I do not eat out at restaurants as a general
rule (I have not had any problems from the few times I have, because I
have checked everything out in advance.) I carry my own food items when
I fly, and will not eat anything they provide if I have the slightest
suspicion. The several times I have had reactions, I could not narrow
the cause down.
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i am not the celiac. my 5 year old(6 in 2 weeks) son is. i'm not sure
how sensitive he is. we do have occasionaly accidents, probably about 1
every 3 mths or so. and i rarely know what it was that caused it.he is
very, very good about the diet and so is the school he goes to, but i
guess he could still pick something up there. our accidents usually
result in several loose, smelly stools over the course of 1 day. it used
to take him 3-4 days after the ingestion of gluten to have the "yuky
poo-poo"(this is what we call it), but now i'm not sure because i can't
ever track down the source.
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I can handle the toast crumbs now, where I couldn't a year ago (I am
about 18 months gf). I never did react to vinegar or vanilla, but canola
oil didn't go down well. When I first went gf I reacted to the toast
crumbs, the salad that I ate after taking the croutons out, the stamps
and envelopes, and everything. I'd get the whole digestive thing for a
day or so, plus the coming-down-with-flu achiness and "the stupids" that
would last a few more days. I haven't had the full-blown "thing" in
weeks.
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I have times when I have reactions and I do not know what triggered it,
I am very sensitive, so it only takes a crumb. I try my best to stay GF,
but have an incident about once every week.
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The last time that I knowingly ingested gluten, I ate a bag of Doritos
(it was a choice between risking getting sick from gluten or getting
sick from not having eaten) - no reaction at all. I have only had one
gluten reaction since goinggf (diagnosed October 1998) and I THINK it
was becauseof cross-contamination. I am not one of the celiacs that has
immediate, intense reactions to gluten
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I could probably eat a 1/2 piece of bread and not have any noticeable
symptoms. The second or third piece would bother me. I do not because I
do not want to cause permanent damage. Yes I have had biopsies so I am
not self diagnossed. I was having diarrhea regularly for a while and as
I prepare almost all of my food from scratch I was quite sure I was not
getting hidden gluten. I ate some bread on purpose so I could determine
if it was gluten. The symptoms were not the same. I did have diarrhea
but differently. If I had not my doctor would probably have shrugged it
off as hidden gluten.
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My husband was diagnosed only 4 months, however, in retrospect, we are
certain that it all started about 15 years ago. He has had 2 or 3
incidents since going GF where we are sure that he got something with
gluten in it, but could never figure out what it was. One was at a
family gathering where he ate what we brought and then had some
guacamole and corn tortilla chips that were supposed to be GF as well as
a couple of soft corn tortillas with a chicken filling made by a cousin
of ours who is Mexican. Another time we went out to eat and he had a
plain grilled steak, plain baked potato, and plain salad -- we brought
our own salad dressing and butter, One thing we have found interesting
in this whole saga is that he has had a raised red very itchy rash on
his back for as long as we have been married -- nearly 18 years, and his
sister tells me that he had the rash when he was a little boy as well.
He is 58 years old now. As he has been GF for 4 months, the rash has
slowly been disappearing. He only has a small area now on his back
between his shoulder blades and up to his hairline that still has some
red marks -- still very itchy. When he was first diagnosed, we asked
both our GP and Gastroenterologist about the rash and they both felt it
was not DH. That may be the case, but since going GF, it is
disappearing, so it MUST have some connection. Makes common sense.
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I have been diagnosed 2 years, after displaying what I now know to be
symptons for 5-6 years. I am very sensitive. I know that I eat a more
restricted diet than many and than perhaps I need, and I don't often eat
out or eat meals prepared by others, I take my own meals. I have my own
toaster,butter, jam, breadboard and knife. I don't ingest gluten often.
I cannot tolerate any. Early on I tried drinks with caramel colour in,
and dried fruit that I knew could have been dusted and had a reaction to
both. -after eating a yoghurt bar that didn't say gf, but when I read
the ingredients & bought it, I somehow missed the ingredient
maltodextrin. result incredible stomach cramps followed by constipation,
headaches, depression and lethargy, about a week. This was early on in
my diet. -once after eating a so called plain roast at an acquiantance's
house. I later discovered it had been marinated in sherry. results ditto
to a lesser extent. - at an aniversary function where the waiter assured
me the risotto contained only rice, homemade stock and mushrooms. ( I
think it was thickened with flour). reaction same as above. My kitchen
is gf except my husband has ordinary bread and muesli, we may not be as
careful as we think we are sometimes.
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I have only had two occaisions of diarrhea in 3 years since diagnosis
that I believe was a result of eating a hamburger patty that was cooked
on a grill next to the buns. I recently (Nov.1999) had my blood drawn to
check the levels of Antigliadin IgA, Antigliadin IgG, and Antiendomysium
IgA at the Celiac Disease Foundation's meeting in Pasadena. My results
were all normal so I am relieved that I am doing something right in my
gluten-free diet. I am the only family member with Celiac Disease in my
house. Although the family meals are gluten-free, I do have regular
snacks and breakfast foods for my children. I try to be as clean as
possible. I have separate jars of jelly,peanut butter, and butter type
spread so I don't worry about crumbs on a knife . I do have the same
toaster oven,but I clean it after a gluten food is used.