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

The following was sent to the list December 16, 1999:

> This is my first official post to the list.  I usually just read and
> absorb the very helpful information given by others.
>
> I am one of the two people mentioned below from the summary Lynn did on
> Gluten Intolerance.
>
> This summary has left me with many questions.  My physician told me that
> I was Gluten Intolerant, not a Celiac.
>
> I am generally a very healthy person.  I have no problems with my health
> outside of the occasional flu or cold.  I am physically fit and
> energetic. I eat fairly well, and have no apparent signs of vitamin
> deficiency.  The problems that led to the diagnosis of "Gluten
> Intolerance" were symptoms like gas, bloating, pain during digestion,
> and headaches.  All symptoms pretty much went away upon eliminating
> Gluten from my diet to the best of my ability.  If I ingest Gluten, the
> symptoms will very quickly reappear.
>
> Celiac disease or Gluten Intolerance is something that I had never in my
> life heard of, and am not aware of any members in my family that appear
> to have the same problems.
>
> Should I be seeking more testing?  Or should I just settle for knowing I
> can't ingest Gluten and be satisfied with that?  Are there deeper
> consequences I should be worrying about?
>
> Thanks for listening!
>
> Sherry


Hi There!

I would like to thank everyone for the kind, and well thought out
replies to my questions on gluten intolerance, as well as the sites to
locate research on the subject.  I received 19 responses.

I will try to keep this as short as possible, but that may be
difficult!  :)

The majority of the people who replied to my questions feel that I am
indeed Celiac,  and the only real differences of opinion are whether or
not I should go through with any testing.

Some said I should be tested for peace of mind, where others felt that
if I knew of the problem and how to prevent it, there is no real need
for testing.  There are both good reasons to get tested, as well as good
reasons not to get tested.  I guess this is where personal choice comes
in. :)

Someone suggested that there was a possibility that I am just "wheat
intolerant" and that I might want to give barley, rye, or oats a try.  I
do eat oats now, and they don't seem to bother me at all.  I have yet to
give the other two a try, but am seriously considering it.

It was also suggested that if I am not tested I may not be as strict on
the diet as I would if I were diagnosed as Celiac.

I am not 100% sure of what I am going to do yet, but with the support of
my wonderful family and some very kind listmembers, I think i will make
that decision soon.

The following sites were suggested by other list members, primarily one
listmember (that i am extremely grateful to!) and I am sure a lot of you
have them already, but I will include them just in case:

For an excellent in-depth explanation of the tests and what they mean,
try this website: http://www.enabling.org/ia/celiac/diag-tst.html#US

Good advice is simply to contact your nearest celiac support group (look
in white and yellow pages under "celiac" or "gluten") and ask them to
recommend a GI doc that their members have found to be reliable. If no
groups are listed, check Scott Adam's excellent site
<http://www.celiac.com/> or call CSA/USA (Celiac Sprue Association)

Many who are just lactose intolerant may be able to drink Lactaid 100,
which is real milk with all the lactose removed.  But some may also be
sensitive to the protein or casein in milk.  In this case they may want
to drink soy or rice milk, if they are not sensitive to that too.  Here
are the two brands I've checked on and find to be decent tasting, and
they are easy to remember because everything in their line of milk
substitutes is (GF):  Pacific (all rice and all soy milk substitutes)
and Better Than Milk (all soy milk subs).  For additional choices check
this website:  http://www.fastlane.net/homepages/thodge/MILKALT.txt

Celiacs must also be aware that some may have damaged their intestines
so much that molecules of some substances can "leak" through the walls.
This may cause sensitivities to other foods as well; hence, in order to
avoid this, it's imperative to maintain a diet that will allow the
intestine to heal as soon as possible.  Because of this "leaky gut,"
celiacs may develop sensitivities, allergies or intolerances to almost
any food.  For further information check:
http://www.healthy.net/library/articles/galland/Leakygut.htm

Here are some Internet sites we have found helpful.  Keep in mind that
not all celiacs nor all celiac organizations, nor all countries agree
on everything:

http://www.ajcn.org/cgi/content/full/69/3/354#SEC8 = Every celiac should
read this first. A very helpful article by Dr. Murry, perhaps the most
knowledgeable of celiac docs.

http://www.aafp.org/afp/980301ap/pruessn.html = an excellent article:
"Detecting Celiac Disease in Your Patients," by HAROLD T. PRUESSNER, M.D.,
University of Texas Medical School at Houston.

http://www.gluten-free.org/ = Don Wiss's site has a lot of information
and links to other helpful sites.

http://csaceliacs.org/ = This is the Celiac Sprue Society's site. You may
want to order their 89 page CSA commercial products listings booklet. It
lists a lot of brand names of GF products, and it is a great help at first.
Some celiacs do not trust the organization or the booklet implicitly so
they phone and check out everything before they eat it, but it's a good
place for beginners to start , rather than starting blind with no idea
as to what may or may not be GF:

http://www.gluten-free.com/contacts2.html#G = This offers numerous sites
where you can check on just about anything, including some sites where you
can order GF products.

http://www.geocities.com/HotSprings/Spa/4003/gf-index.html = Another good
site that has extensive lists of GF foods, medicines, beverages, etc.

http://www.stokesrx.com/ = You can order Stokes book, A Guide Through the
Medicine Cabinet. It will tell you whether most medicines have gluten or
lactose in them. Or you can have them prepare GF or lactose free medicines
for you.

http://www.enabling.org/ia/celiac/sn/spnk9701.html#trier = Doctor Murray
explains some of the symptoms of celiac disease.

For Canadians, either: http://www.celiac.edmonton.ab.ca/ = Canadian Celiac
Association or http://www.celiac.ca

Here are some companies (US and Canadian) where you may order GF food by
mail:
Ener-G Foods: http://www.ener-g.com/nrg2.html
Gluten Free Pantry: http://www.glutenfree.com/toc.htm
Gluten Free Mall: http://www.glutenfreemall.com/
Kinnikinick: http://www.kinnikinnick.com
Miss Robens: http://www.geocities.com/HotSprings/Spa/4003/gf-index.html

Thank you all again for your help, and I hope you all have a very safe
and Happy New Year!

Take Care,
Sherry