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I got a lot of answers to my wondering. In the first group are those who
more or less agreed with my supposition. I'll get to the second group
later. -vance

Interesting concept. I too have wondered why people have such violently
different responses.

I wonder if the length of time untreated has anything to do with it. I went
untreated for 50 years and was in terrible shape. I fall into the group 2
category as far as symptoms and quickness to react. However, I don't seem
to be overly sensitive to shampoos, etc. or other things such as dairy, soy
and so on.

Group 1 symptoms are serious enough, I didn't even imagine that they got
worse than that. The difficulty breathing may be similar to mine due to
wheat intolerance.

I've been looking at this for a long time...my take on it is,
there are the symptomatic folks (who react to any exposure) and the
asymptomatics, who might react with constipation, even, when exposed.
I've come to suspect we are dealing with 2 different models....the first
group, the hard and heavy reactors, have more of an autoimmune disorder.
Kind of like type 1 diabetes, which is also an autoimmune disorder.

Are you stating this in such a hesitant manner because you are really
uncertain, or to be diplomatic? It's certainly obvious to me that this is
the case. It's also frustrating to see allergic people asserting that all
celiacs need to, for example, avoid shampoo with glutenous ingredients,
when all celiac medical experts agree that gluten must contact the small
bowel lining to produce any effect.

I've been wondering the same thing. I just can't see how these immediate
reactions that sound like allergic reactions can result from intestinal
damage due to gluten (celiac disease). I too suspect that these people
have allergies to wheat, etc.

This is not to belittle or make light of their symptoms; after all, it
is the allergic reactions that can sometimes be immediately life
threatening. And I see no reason why a single person could not have both
celiac disease and such an allergy.

Interesting theory .. certainly agree there are two overall "types" - going
by what's posted to the list, etc.

I AGREE!

seems like there tend to be similar "groupings" on the [log in to unmask]
list for autistic kids, a definate subgroup of autistic kids affected by
gluten and casein - with out testing positive for celiac or other allergies,
must be some other mechanism at work in the gut to the brain idea.

We have both types of celiacs in our family. My 21 yr.old son(celiac for 4
yrs now)only gets sick if he eats gluten. Going into a bakery does not
bother him except for the obvious reasons. He can even drink beer (which he
has given up) without any reaction. His 3 cousins in Philly cannot put a
drop of beer to their lips without a severe reaction. They are also
diabetics. I don't know if that has any bearing on this whole thing. As a
former lab tech I have always been intrigued by the differences in our
family celiacs.

Hello. I am Kevin Conners residing in Eaton, Ohio. I fall firmly into Group
1. What is different about my particular celiac manifestation is that I
seldom react with diarrhea, but rather with constipation and severe
bloating.

Could the difference be that group 2 has suffered more damage that isn't
healing and therefore the whole body has more damage than just the villi?
Also some may have more allergies to the elements and not to foods .  I have
only gluten free foods that I serve to my family with celiac disease, and my
friends that do not have celiac disease.  Still I have to wear a mask just
preparing the foods with flour and etc.  or else I get ill from breathing it
in, as no matter how careful I am the flour does get into the air.  I have
permanent damage since I don't usually respond to messages I read on my list
server (only read and get knowledge) I feel I should let you know that your
message put in words what I have had in the back of my head.  Since I am
very fortunate not to have a severe reaction to gluten other than the
"runs", and never have lost weight (I've gained) you explained my thoughts
very clearly.

You are probably right, though an allergist might argue that it is not true
allergy because they don't have the traditional immune response measured in
allergy test - these other symptoms of undesired reaction to a common
substance do not qualify as "allergy" - I guess "sensitivity" may be the
fallback term to use...

Can we be in group 1, with a tinge of group 2?? I'd
say, I'm a group one, but there are some things that
give me an immediate reaction and I also get the
fuzziness in my head "sometimes". (Please note, I said
"sometimes"!!)

It may actually lead us to some resolution to look closer at those 2
larger groups. I will certainly discuss this with my MD next time I go.

I agree with your observation. I've also seen this in the support group that
I have of late been avoiding. What I find troublesome at times is group 1
isn't always understanding of group 2 and vice versa. I think some people
don't realize that every ache and pain they have isn't necessarily celiac.

sounds like good wondering.

I believe there are many people who have Celiac disease also are allergic in
some way to wheat as well and this is why they get an immediate reaction.

As usual, interesting speculation. I agree that we 'quick reactors' with
other odd symptoms probably do have additional health issues. My
response to barley is far more severe than my response to wheat - wheat
produces fatigue and digestive tract symptoms. Vitamins with barley in
them - 1 pill - put me into that 'drugged' sleep that was my main
complaint before diagnosis. So - barley allergy + celiac? Likely!

EDITOR'S NOTE: Then there was another class of people who thought they were
in a third group because they didn't react at all or because they took a
day or two to react. In my mind I had  them included in group 1, since it
is not unusual for a celiac to take two days, or two weeks, to react -- or
not to react at all.
-vance

I agree with you. But I think the differences are more than just two
groups.  But yes there are differences. And I think that someone just
recently said that there are probably different proteins that each of us
response to but we are all lumped under this one category. It only shows
that what is currently known is only the tip of the ice burg.

I don't think I fit either mold. It can take even a couple of days for me to
know I've injested gluten--depending on how much. Also, I have a definite
sensitivity to topical application of gluten to my skin--I get a rash the
same day of exposure. It is interesting that there are so many differences
among celiacs--I never realized that before I joined this list.

Please put me in Group 3: I react within the hour to gluten, but the
next day is really hell. My symptoms are all of the above in group 1
and group 2. I can take oats but not wheat gluten. I can't take quinoa
or soy as they both worsen my ADD, and these are found in many
GF products. Its such a mess trying to figure this whole thing
out sometimes!

What about grp 3? Those of us who eat gluten (inadvertently) and not react
for over a day?

One more group of CD players. Those that have no reaction at all. In my
case I can eat wheat and gluten products with no outward negative
reactions. Internally though I'm just like any other Celiac, my small
intestines waste away without any knowledge to myself. It can be quite
dangerous. In fact I am extremely grateful to people on this site who
explain their reactions to all situations. Since I so not have that outward
thermometer, without their stories and experiences to draw on, I could be
destroying my life progressively without even knowing it. I continue to
wonder how many Celiacs like myself go undiagnosed yearly until it is too
late for them (cancer, skin disease, etc..).

In addition, there are those like myself who do not react even within hours
to a gluten accident. I went on a gluten challenge for 9 days and it took 6
days to become nauseated and my DH rash never came back, There are many
people who have been diagnosed only because of anemia and they never had
intestinal symptoms and these people would probably never react except over
time where there iron would become low.

EDITOR'S NOTE: Then there is this one who seems to have a delayed allergic
reaction, in addition to celiac. We are all different, aren't we? -vance

Add me to a group three. I notice some GI disturbance that usually takes
a day to materialize and then a day to disappear. After that it takes
very little time for me to notice my other ill effects, and those effects
usually target my central nervous system. (Headaches, disorientation,
chills, arthritis, prostitis, and numbness.) This is also when I start
showing an increase in my complexion problems, these problems are also
acompianied by very hard nodules that form in the fleshy recesses of my
skin -- between the fingers, in the earlobe, stuff like that.