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Thanks to everyone who responded to my posting about how I react to
gluten in my environment.  Many people suggested this was probably an
allergic reaction, not a gluten reaction.  However, I do not think so.
My symptoms are all identical to the ones I get if I happen to ingest
gluten - only not so severe.  Also, before I realized skin tests were
basically worthless in people with CD, I had them and did not test
positive for any food.  I assume that somehow the gluten is entering my
system when I am in an environment with it - perhaps through my nose, I
don't know.  All I know is that although my GI doc says I am healed, I am
not absorbing totally and I am never able to get totally well.  I am
convinced that the reason I can not get 100% well is because I am
routinely exposed to gluten - basically any time I go anywhere outside of
my apartment.

My question was for suggestions as to how to travel and visit relatives
with these constraints.  I heard from a lot of people who could not
believe anyone could have such severe problems.  I also heard from a lot
of people worse off than me, including one woman who didn't even like to
go to her local celiac support group because even people there did not
understand the extent of her sensitivities and food intolerances.  I had
many suggestions to wear a mask, one to get an air purifier/ionizer to
wear around my neck.  Suggestions to take the train (doesn't go there) or
to drive (takes 3 days each way), stay in a motel and just meet relatives
somewhere in the open, get them to get all the gluten out of their
kitchen (even the poster realized this was highly unlikely).  One woman
who has additional very severe environmental sensitivities wrote how she
only goes on vacation about every 3 years because she will go for about 3
weeks at a time, rent a cottage, bring her own linens and cleaning
supplies and clean it very thoroughly when they get there and have the
air filter changed before they arrive.  I had many comments about things
to watch out for in other people's houses - dishtowels, handles on
refrigerators and cupboard doors, hotpads, etc.  I also got comments
about not kissing anyone (very difficult with little kids who like to
kiss).  At this point, it just appears I will not be doing any traveling.

In regards to my not being able to eat more than about 2 dozen foods,
again I heard from people worse off than me.  I also heard from people
telling me to include various foods or exclude various foods - generally
not possible with only 2 dozen ingredients - many of which are more
"exotic" (elk, buffalo, artichokes, pomegranates, pomelo, etc).
Generally it appeared that unless it was someone else who also was in a
similar situation, most people did not understand this type of situation.

I also heard from a lot of people recommending various supplements,
alternative types of treatments and getting to a good doctor.  I have
tried MANY of the supplements, etc recommended on this list; I have been
to regular doctors, alternative practitioners.  I can't tell you how much
money I have wasted and how many foods and supplements I have thrown
away.  Unfortunately, most of the things I have tried have not only not
helped, they have made me worse.  Besides the digestive enzymes, the only
thing that I have tried that has been recommended on this list that
actually helped was the L-glutamine.  Even the probiotics made me sick,
although recently I have been taking Culturelle, which I can tolerate.
Someone also recommended taking the DPP-IV enzyme from Kirkland
(supposedly digests gluten and casein) whenever I am going to be exposed
to gluten.  I have tried that and it didn't seem to do anything, but in
any case, I never know when I might be in a situation where there is
gluten around.

Again I thank everyone who took the time to write.
Diane
Denver

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